Author Topic: Advice on providing support (and coping) with parent's Alzheimer's  (Read 5163 times)

okits

  • Walrus Stache
  • *******
  • Posts: 8682
  • Location: Canada
FIL is in the middle stage of Alzheimer's, combined with other health problems. We are at the point of near-daily incidents (inappropriate behaviour, emotional episodes that are hurtful to family members, wandering.) After a hospitalization a few weeks ago MIL, SIL, and DH followed the unanimous medical advice to place him in assisted living (it was only a matter of time before he had a potentially-fatal fall at home and this decision was to avoid that.) With time he is becoming more maladjusted to this new situation, not less.  The daily stress of it is starting to break us down, and the unhappiness is dominating our lives and crowding other things out.

I've done some online reading and gone through materials from the Alzheimer's Society, but hoped the MMM community would share stories or advice. Was there anything you did to make things easier on the ill parent, the well parent, other family members, or yourself?  Coping strategies?  As the DIL (not the direct child of the ill parent), what should I do (or not do) to be supportive?  My natural inclination is to offer solutions but I've found this to have little positive effect, so I need to find a better way to help DH and family through this.  Advice on not letting the near-constant misery take over everything?  The past few days have been a real low point and I want to try to make things a little better.

Pennsylvanian

  • 5 O'Clock Shadow
  • *
  • Posts: 21
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #1 on: August 10, 2015, 11:10:59 PM »
I find the tone of the post insensitive to the patient that has been wrenched into a new and unfamiliar home with no notice. The stress is hard on the family? Yes, Alzheimer's is a great inconvenience to those around the one suffering. Get help: contact the local dept of aging, request a care manager from your local county or state, Medicare or social services.

There are no solutions. Focus on decreasing anxiety and increasing joy for the diagnosed person and not falling into a trap of trying to pretend it is not happening or is shameful or is the diagnosed person's fault.

LeRainDrop

  • Handlebar Stache
  • *****
  • Posts: 1841
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #2 on: August 10, 2015, 11:16:02 PM »
I wish that I had advice to offer you, but unfortunately do not.  I hope you're able to find peace with this difficult situation soon.  (Just chiming in because I didn't want to leave you with the only response on this topic to be that your original post sounds insensitive.  I did not read it in that tone at all.  That said, his advice to reach out to local resources is a good one.)

deborah

  • Walrus Stache
  • *******
  • Posts: 8575
  • Location: Australia or another awesome area
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #3 on: August 10, 2015, 11:46:20 PM »
There are low points and lower points. And I don't think there are any solutions.

My grandmother had Alzheimer's for more than 15 years. She had lived by herself, so although the family visited her every day (we all lived in other communities), we didn't realise that was where she was, but she had an accident, and needed looking after (she may have broken a bone?), so my mother stayed there. It was a small community, and mum discovered that grandma was paying for things by holding out a fist full of money. She'd had meals-on-wheels for years, so she wasn't cooking anything (only in the microwave).

She went into care as a result of mum staying. Grandma had a great fear that she had Alzheimer's (her mother had it), and she asked everyone who visited whether she had it - no-one told her she did.

Moving made a big difference to her - and I've noticed that with other people too - they all went downhill - maybe because nothing was familiar. She was confused. My uncle visited her every day. However, his FIL died, and he missed a day when he went to the funeral. Grandma had been complaining about "the other woman" (my aunt), and had been confusing my uncle with my grandfather (who had died many years earlier). She decided to teach him a lesson for not visiting her, and went out onto the road (an arterial highway), and tried to get run over. She had to be moved again, which also caused another drop in her mental abilities.

It was a long tragic process. There was the day she ate the flowers my aunt brought her (she had just finished lunch, but knowledge of hunger goes too). She had long forgotten who anyone was, and seemed much happier than she was at first. But things just kept going downhill. Each time I visited her during the last few years before she died, I would sit in my car after the visit waiting until I stopped crying. She was confined to bed - just a skeleton on a bed waiting to die. I always found it incredibly difficult to see her, who had been a mover and shaker in the community, reduced to this. Even then, my uncle and one of his sisters visited her every day because they lived the closest.

It took a lot for everyone to believe there was a problem at first. People didn't want to believe their mother wasn't, and would never again be, herself. Everyone had to work things out for themselves. When she could still recognise people, we had a lot of pictures of family and friends in her room, and everyone went through the albums with her. She liked that, and would often recognise someone after a little while, only to lose recognition a few minutes later. It was important to visit her. There were so many people there who had no visitors, and who popped their heads up whenever a new visitor arrived for someone else.

Most people die much sooner than my grandmother did. Most families don't go through the whole saga. And there are illnesses that can lead to an incorrect diagnosis of Alzheimer's. However, 50% of people over 85 get it. My grandmother was just short of her 100th birthday when she died.

MDM

  • Walrus Stache
  • *******
  • Posts: 9411
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #4 on: August 11, 2015, 01:41:34 AM »
I wish that I had advice to offer you, but unfortunately do not.  I hope you're able to find peace with this difficult situation soon.  (Just chiming in because I didn't want to leave you with the only response on this topic to be that your original post sounds insensitive.  I did not read it in that tone at all.  That said, his advice to reach out to local resources is a good one.)

+1

Okits, sorry to hear of this.  Pennsylvanian, it appears you too have someone close with a similar affliction, so sympathy to you as well.  It may be in the eye of the beholder, but I thought okits' summary was a very balanced description of the problems faced by all, and a request for suggestions to help all.

Yes, do use resources available to you.  Ensure all the legal considerations (power of attorney, health care directives, etc.) are handled.  Takes turns supporting each other - everyone goes through cycles, so accept help when you feel low and pay it forward to others when you feel stronger.

For your specific situation as a DIL, I can't presume to know your family dynamics well enough.  Support your husband first, and perhaps he can suggest what would be most helpful to others in the family.  It's also possible you, being somewhat removed, have the best perspective of all - no way to know from the internet....  Good luck.

11ducks

  • Pencil Stache
  • ****
  • Posts: 559
  • Location: Duckville, Australia
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #5 on: August 11, 2015, 02:54:51 AM »
I'm sorry for you and your family. There's nothing you can really do that will make the slow death of a family member any better, so I'll suggest practical things.

You could offer to visit with the patient for a night specifically so that DH and family can have some time together not focused on death and sadness. You can ease the burden of them feeling too guilty to spend vital quality time together by ensuring Grandpa is not alone. It's important that they keep the family bond strong in these times

Be a listening ear for when they want to share stories about him. You could make it a project (when/if appropriate) to collate the funny/sweet stories they tell about him, in a journal. If he still has cognizant moments, see if you can have him recount stories/memories too.

Bake casseroles/cookies/take flowers, to let SIL and MIL know you are thinking of them

Offer to babysit any kids to give SIL a break

Hugs.




MayDay

  • Magnum Stache
  • ******
  • Posts: 3941
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #6 on: August 11, 2015, 06:22:34 AM »
As the DIL, you may or may not be able to suggest this outright, but you should get a Hospice evaluation done. 

Whether or not Hospice is involved, you can choose whether to treat things like a UTI, which are common in older women (maybe men too?) in nursing homes, and which can either be treated, or just symptom management.  If you choose symptom management, it can be a very pleasant way to go.  It depends on her wishes though- have the family talked about it?  Does she have a DNR, etc?

Pretty much all people with memory problems who have to go into a care center get much worse.  They use their familiar surroundings as a crutch to cover up the memory lapses, and when they are out of the house, they lose all those bearings.  They aren't really worse- you are just seeing for the first time how bad they were the whole time. 

My grandma had to be moved into memory care.  She had gotten quite underweight, and her medical needs weren't being managed well.  A few things happened at first- they got her confusion (and thus she was quite upset- you would be upset too if you were confused) under control with medication.  They "fattened her up" by providing lots of food at meals, and Ensure type shakes between meals.  They treated every little medical thing like UTI's.  Eventually my dad and uncles said this is ridiculous.  She is in her 80's and has no mind left, why are we prolonging this?  None of us would want it, why would she?  They stopped the between meal shakes, they stopped treating things like UTI's and just did symptom management.  She declined fairly quickly, and died peacefully.  The goal of the family changed from keeping her alive to letting her go. 

okits

  • Walrus Stache
  • *******
  • Posts: 8682
  • Location: Canada
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #7 on: August 11, 2015, 07:01:57 AM »
Thank you, everyone, for your comments.  I will respond in more detail tonight but wanted to say that your stories and advice are helping.

Kitsune

  • Handlebar Stache
  • *****
  • Posts: 1769
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #8 on: August 11, 2015, 07:17:57 AM »
Alzheimer's is hard. It's hard on the person afflicted, who is confused and freaked out. And it's very, very hard on the family surrounding them.

When my grandmother had Alzheimer's, my mother was the primary caretaker (as per my grandmother's living will). The family situation was... not great (in the sense that the extended family is still in court over a family member lying to her, abusing her, and raiding her retirement accounts while she was too sick to notice... Yeah. I certainly hope most families aren't dealing with that.) But: the entire ordeal was hell on my mom. Based on my experience with my grandmother: being around someone with Alzheimer's is EXHAUSTING. The conversation goes around and around and around, and any answer that doesn't fit or gets them confused makes them confused and ANGRY, and then they don't remember why they're angry but they're still angry... Add to that the caretaking tasks: the nursing staff (at the excellent nursing home my grandmother was at) could help patients bathe every 2 days (and when someone is wearing adult diapers, let's just say that's really not sufficient...). Also, we're talking about an elderly person who has been seen unclothed by one person in the past 75 years - being seen nude by a stranger just freaked her out, understandably. So then we're getting into bathing, hair-washing and styling (if she can't do that), clothing preparation, food-related issues, etc. It's WORK, and it's demanding, and it's exhausting. We do it because we love the person, but that doesn't mean it's easy.

The best thing we could do for my mom was to visit her mother for a few hours to ensure she'd get a break while her mother was still being taken care of. We also ran errands and did the non-personal care-taking (sewing buttons back on clothes, buying her new socks, fixing the radio, etc). Finally, we made sure that when my mom had spent an exhausting day with my grandmother, she came home to a clean house, dinner made, a glass of wine, and no demands until she'd had some downtime.

Sometimes, it seems inappropriate for a non-relative to do the more intimate care tasks, and also a person with Alzheimer's or dementia can be more confortable around someone they might recognize or feel might be familiar, so the 'active' caretaking role does fall to that person's child/blood relative. Supporting your husband as he supports his dad might be the most valuable thing you can do.

I'm so sorry you have to deal with this. It's tough, and it sucks.
« Last Edit: August 11, 2015, 09:06:34 AM by Kitsune »

swick

  • Magnum Stache
  • ******
  • Posts: 2884
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #9 on: August 11, 2015, 08:26:14 AM »
Alzheimer's sucks. for everyone. It is probably one of the worst experiences for a person and their family to go through.

Supporting and coping is really all you can do. I have found that the more you resist what is happening, the harder it will be - and you can't take it personally. Nothing that happens or is said is a reflection of you - so you can't let it get under your skin.  It is a scary time and process for everyone.

Aromatherapy can help a lot. I didn't have the opportunity to use it with my Grandma, but have made blends for fiend's who are going through it. There are some oils that improve memory and cognition (Rosemary, Peppermint) oils that decrease agitation and having calming and anti-depressent properties (Lavender, ylang-ylang, orange)

You can make blends to support your FIL as well as support the caretakers on a physical and emotional level. Aromatherapy in this situation is useful because it is something you can do for immediate results (gives you a sense of purpose) and will make everyone more comfortable. The act of applying the oils through massage can be de-stressing and a relaxing bonding experience. Other then the actual health benefits, I find it is really helpful because it gives you something to do and focus on, a tangible way of helping.

Here is some research if you are interested:
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=306&pageNumber=2
http://www.ncbi.nlm.nih.gov/pubmed/20377818
http://aromatichealth.ca/2010/11/essential-oils-in-the-treatment-of-alzheimers-disease-and-dementia/

If you have any questions or want some ideas for blends, send me a PM. *Usual Disclaimer* I'm not a doctor and not offering medical advice. I'm in the process of getting my RA (Registered Aromatherapist)

Cassie

  • Walrus Stache
  • *******
  • Posts: 5526
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #10 on: August 11, 2015, 02:40:18 PM »
A good friend of mine is going thru this & her hubby is dying of cancer. They have no family here & she has no family left at all so my hubby & I am doing everything we can to help.  She was such a sweet person but is now getting more & more angry. WE just had her put on anti-psychotic meds because she wanted to go find her long dead dad. Was getting up in middle of night & doing strange stuff. I watched her for 5 very long days while my hubby took hers out of state for medical care.  Neither of them can drive now.  He does not want to put her into a nursing home but that day is coming as he gets sicker.  Since she loves to travel he took her on a 3 week vacation to see all their friends/family all over the country & by the end she was much worse.  She has fought & beat cancer many times & if it comes back she wants to treat-she doesn't have Alzheimer's, etc. I have also found she is getting very paranoid but it does no good to tell her it's not true, etc. It just upsets her more. She sneaks around listening to conversations because she is so paranoid.  She asks you the same question every few minutes & really can no longer carry on a conversation.  It is so very sad-I have cried a lot over it.

TrMama

  • Magnum Stache
  • ******
  • Posts: 2914
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #11 on: August 11, 2015, 03:05:07 PM »
I'm so very sorry your family is experiencing this. Alzheimer's and dementia suck.

I know it seems like he's been in the nursing home for a long time already, but it's only been a few weeks. Even if he never adjusts to his new "normal", DH and MIL will. Just give them some more time. In the meantime, support them as best you can. Make them healthy meals, do their errands, sit with FIL so they can take some time away and let the nursing home staff do their job.

If you can encourage them to do anything it would be to step back a little. He's in as safe a place as he can be right now and it does no good for DH and MIL to wear themselves out catering to him. If you can get DH out to do something he loves, that would be great, but it may be too soon for him to think of these things. Exercise would be a great outlet for all of you at this time. It's the best stress reducer. If you can't get DH to exercise, at least go out yourself so you'll be better equipped to support him.

okits

  • Walrus Stache
  • *******
  • Posts: 8682
  • Location: Canada
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #12 on: August 11, 2015, 09:30:17 PM »
I find the tone of the post insensitive to the patient that has been wrenched into a new and unfamiliar home with no notice. The stress is hard on the family? Yes, Alzheimer's is a great inconvenience to those around the one suffering. Get help: contact the local dept of aging, request a care manager from your local county or state, Medicare or social services.

There are no solutions. Focus on decreasing anxiety and increasing joy for the diagnosed person and not falling into a trap of trying to pretend it is not happening or is shameful or is the diagnosed person's fault.

I don't mean to be insensitive to FIL's confusion and unhappiness.  We're all prioritizing his health, safety, and mood but I think the family members (especially MIL) need attention paid to their wellbeing, too.  What my OP is trying to describe is a situation that isn't working well for anyone, and that I'm hoping for suggestions and advice on how I can make things a little easier or better for everyone.

Involved are a geriatric case manager, social worker, occupational therapist, physiotherapist, personal support workers, and various doctors, nurses, and the assisted living staff. That things are still going so badly with all these professionals involved prompts me to ask if there's something more or different we could be doing to handle things better.

I think you're right that the biggest help we can provide now is to reduce FIL's emotional distress.  He doesn't remember why he can't live at home (or that he agreed to assisted living), and obsesses about bad things that didn't happen or aren't going on.  On top of the emotional support and reassurance we are giving him he's now going to be receiving medication to try to reduce his agitation.  He was very unhappy when living at home, as well, so I think the emotional distress is a general response to his worsening health, and perhaps an Alzheimer's symptom.

LeRainDrop - thank you for your kind wishes!

deborah - thank you for sharing your story and I'm sorry for everything your grandmother and family went through.  I've suggested to DH that he make some visits that are just to watch sports together and eat snacks (a very "regular life" activity for FIL where if he gets disoriented he can easily pick up what's going on and enjoy himself.)  I'll get some old photographs together so we can look at them together during visits and reminisce.


Takes turns supporting each other - everyone goes through cycles, so accept help when you feel low and pay it forward to others when you feel stronger.


Thank you for this point - it rings true and is reassuring. Leaning on each other can help hold everyone up.

I think MIL has a good handle on the financial and legal arrangements, but I'll ask DH to make sure.

11ducks - thank you for your suggestions.  I have brought up more frequent visits with DH (we live two hours away), and making an effort to organize visits to give MIL a break and time with DD and DH.

Perhaps a bit transparent but I've had some good conversations with FIL in recent months by asking about his working days or his home country. I will make a point to encourage happier discussions, memories, and stories.

Pretty much all people with memory problems who have to go into a care center get much worse.  They use their familiar surroundings as a crutch to cover up the memory lapses, and when they are out of the house, they lose all those bearings.  They aren't really worse- you are just seeing for the first time how bad they were the whole time. 

Thank you for pointing this out. It was subtle, but we did notice confusion at home (like forgetting where things are kept, though the location has been the same for decades.) Even so, we questioned whether we'd made his condition worse by moving him because he did seem so much more confused in a new environment.  You are right, though, that it was easier for FIL to hide his deterioration when living at home. But that doesn't mean he wasn't getting worse as time went on.

okits

  • Walrus Stache
  • *******
  • Posts: 8682
  • Location: Canada
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #13 on: August 12, 2015, 12:09:51 AM »

The best thing we could do for my mom was to visit her mother for a few hours to ensure she'd get a break while her mother was still being taken care of. We also ran errands and did the non-personal care-taking (sewing buttons back on clothes, buying her new socks, fixing the radio, etc). Finally, we made sure that when my mom had spent an exhausting day with my grandmother, she came home to a clean house, dinner made, a glass of wine, and no demands until she'd had some downtime.

Sometimes, it seems inappropriate for a non-relative to do the more intimate care tasks, and also a person with Alzheimer's or dementia can be more confortable around someone they might recognize or feel might be familiar, so the 'active' caretaking role does fall to that person's child/blood relative. Supporting your husband as he supports his dad might be the most valuable thing you can do.


I'm so sorry your grandmother experienced elder abuse by a family member (sounds very serious if the courts are involved.)

Your advice makes a lot of sense.  I'm going to be more active in trying to take things off MIL's plate, trying to create periods of time where she can just decompress, and doing things in the periphery to be helpful (the same would be helpful for DH.)  You're right that there's a level of comfort absent because I'm not a blood relative, so the personal care aspect isn't something I can contribute to.

swick - sending you a PM.  :)

Cassie - bless your heart (and your husband's) for being so involved in caring for your friends through their declining health.  As terrible as the situation is, they are at least fortunate to have you and your DH.

I'm so very sorry your family is experiencing this. Alzheimer's and dementia suck.

I know it seems like he's been in the nursing home for a long time already, but it's only been a few weeks. Even if he never adjusts to his new "normal", DH and MIL will. Just give them some more time. In the meantime, support them as best you can. Make them healthy meals, do their errands, sit with FIL so they can take some time away and let the nursing home staff do their job.

If you can encourage them to do anything it would be to step back a little. He's in as safe a place as he can be right now and it does no good for DH and MIL to wear themselves out catering to him. If you can get DH out to do something he loves, that would be great, but it may be too soon for him to think of these things. Exercise would be a great outlet for all of you at this time. It's the best stress reducer. If you can't get DH to exercise, at least go out yourself so you'll be better equipped to support him.

Thank you, TrMama.  :)  I do see what you mean, that it hasn't been that long and maybe we're still finding the right configuration of medications, care giving, and managing behaviour to make FIL more comfortable and to decrease incidents.  MIL, FIL, and DH are settling into a bit of a routine, which may help things calm down a little.

DH, SIL, and I are all very worried that MIL is wearing herself out.  We are going to keep offering and encouraging ways to help her look after her health.  She and I could both stand to exercise more (I agree - it does help.)  Unfortunately, DH already works out daily so I don't know that adding more exercise will decrease his stress much.  I am encouraging him to get out and see friends - perhaps that will help lift his spirits.

Thank you everyone for your support.  I respect the intelligence and insight of this community's members a lot, so it helps very much to hear your experiences and observations.

SisterX

  • Magnum Stache
  • ******
  • Posts: 2758
  • Location: 2nd Star on the Right and Straight On 'Til Morning
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #14 on: August 12, 2015, 01:02:14 AM »
This thread just brought me to tears.  I had never before allowed myself the reality to think that my mother is going to stop caring for herself in the most personal of ways.  I watch her to make sure she eats enough (and other family members, particularly my dad, do as well) and I'm always worried about her falling, but I try not to focus on the long-term aspects of this horrible, horrible way to die because it hurts so much to think about the fact that my wildly intelligent mother can't remember what day of the week it is anymore.
When I see my mom with my daughter I can't help but think, how much of this is she going to remember in a year or two?  When will she start forgetting BabyX's name?  Or mine?  When she talks about parenting with me, she only ever tells stories of my two older siblings and I already think that she's forgotten much of my and my younger sibling's baby and toddler years, which is more painful than I ever would have thought possible.  I'm noticing my mother get quieter and quieter, not only because she can't think of what to say or can't find the words but, frequently, because she doesn't fully understand what's going on around her and doesn't want to ask.  She loses track of tasks in the middle of doing them, but doesn't want to give up doing anything because that would cut into her independence.  It seems like, even at home, she's gone downhill very fast.  I can't even imagine the trauma that will ensue for all of us when we finally do have to move her into some other type of care.
All this is to say, others suffering through this same hell have my complete sympathy, and my sorrow.  There are just no words to take away the pain of watching your loved ones leave you this way.  It is a painful reminder of who they once were to see their shell every day, but without that vibrancy and knowledge and ability which made them who they used to be.

OP, how does your spouse express pain?  Emotional pain, physical pain, doesn't matter.  I find that in most people, the two are related.  If your husband yells or curses when in extreme physical pain, he's probably the type to want to talk and express himself.  Some people are brooders, some are fighters.  Me, I get very quiet and withdrawn when I'm in a lot of pain.  Not grumpy or despairing, just very quiet and reflective.  When I'm emotionally upset, I just want to be by myself for a bit.  I talk with my husband occasionally about what I'm feeling and thinking about my mother's Alzheimer's, but it's a bit forced and mostly just done so that I'm not completely shutting him out.  These conversations are very short, because I find it hard to put everything into words.  I don't even talk with my siblings about it all that much, though I'm very close with them.  It tends to be more functional conversations, updates about a recent fall or what we can do to help her on her bad days.  That's just how I deal with a lot of pain, by absorbing it quietly and then trying to move on.  So, to best help your husband I'd start by figuring out what his, for lack of a better term, pain style is and, frankly, asking him what he needs most from you.  It might be long walks and conversation, it might be time alone to work through this on his own, being held silently, or any number of different things.  If you're just not sure, letting him know in small ways that you're there for him are never a bad thing for a marriage.
Supporting the spouse of the dementia patient is a bit trickier.  I'd say that running errands for her when possible and getting her out, giving her someone to talk to about topics not at all related to dementia, are probably the best things you can do.  Also, asking your spouse if he's got any suggestions for how you could help his mother both shows your support and will hopefully take his mind off his own feeling of helplessness.  Since he knows her better, he might have some suggestions for little things that would make her feel better or less stressed.
Are there any support groups in your area for friends and family of dementia patients? 

Lyssa

  • Bristles
  • ***
  • Posts: 491
  • Location: Germany
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #15 on: August 12, 2015, 03:00:02 AM »
I'm very sorry you are in this situation which I know only too well...

I'm a bit out of time so I can't add my own experiences in full. What may give you a little comfort is the knowledge that the patients' stress and anxiety usually get better over time because past a certain point they no longer understand what they are loosing or have lost already. The worst time is when they no longer can run their own life, are getting worse each week and know it. Seems this is where your FIL is now...

Trudie

  • Handlebar Stache
  • *****
  • Posts: 1653
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #16 on: August 12, 2015, 08:57:53 AM »
I find the tone of the post insensitive to the patient that has been wrenched into a new and unfamiliar home with no notice. The stress is hard on the family? Yes, Alzheimer's is a great inconvenience to those around the one suffering. Get help: contact the local dept of aging, request a care manager from your local county or state, Medicare or social services.

There are no solutions. Focus on decreasing anxiety and increasing joy for the diagnosed person and not falling into a trap of trying to pretend it is not happening or is shameful or is the diagnosed person's fault.

I think it's okay to acknowledge how overwhelmed you are feeling.  I think you have made a good decision to secure assisted-living.  We've faced a similar situation in our family and moved my MIL to assisted living.  We like to say that we'll all eventually "fall", but settings like assisted living and memory care units are there to secure a soft fall and help protect a person's dignity.

I think you are on a good path.  I would express some of the difficulties you're having to the geriatric social workers/staff at the assisted living and see what they recommend.  It's good to remember that they have a world of expertise with these situations and can help engage your FIL in ways that are helpful and respectful.  It's okay to admit that you don't know what to do.

okits

  • Walrus Stache
  • *******
  • Posts: 8682
  • Location: Canada
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #17 on: August 13, 2015, 12:29:49 AM »
This thread just brought me to tears.  I had never before allowed myself the reality to think that my mother is going to stop caring for herself in the most personal of ways.  I watch her to make sure she eats enough (and other family members, particularly my dad, do as well) and I'm always worried about her falling, but I try not to focus on the long-term aspects of this horrible, horrible way to die because it hurts so much to think about the fact that my wildly intelligent mother can't remember what day of the week it is anymore.
When I see my mom with my daughter I can't help but think, how much of this is she going to remember in a year or two?  When will she start forgetting BabyX's name?  Or mine?  When she talks about parenting with me, she only ever tells stories of my two older siblings and I already think that she's forgotten much of my and my younger sibling's baby and toddler years, which is more painful than I ever would have thought possible.  I'm noticing my mother get quieter and quieter, not only because she can't think of what to say or can't find the words but, frequently, because she doesn't fully understand what's going on around her and doesn't want to ask.  She loses track of tasks in the middle of doing them, but doesn't want to give up doing anything because that would cut into her independence.  It seems like, even at home, she's gone downhill very fast.  I can't even imagine the trauma that will ensue for all of us when we finally do have to move her into some other type of care.
All this is to say, others suffering through this same hell have my complete sympathy, and my sorrow.  There are just no words to take away the pain of watching your loved ones leave you this way.  It is a painful reminder of who they once were to see their shell every day, but without that vibrancy and knowledge and ability which made them who they used to be.

OP, how does your spouse express pain?  Emotional pain, physical pain, doesn't matter.  I find that in most people, the two are related.  If your husband yells or curses when in extreme physical pain, he's probably the type to want to talk and express himself.  Some people are brooders, some are fighters.  Me, I get very quiet and withdrawn when I'm in a lot of pain.  Not grumpy or despairing, just very quiet and reflective.  When I'm emotionally upset, I just want to be by myself for a bit.  I talk with my husband occasionally about what I'm feeling and thinking about my mother's Alzheimer's, but it's a bit forced and mostly just done so that I'm not completely shutting him out.  These conversations are very short, because I find it hard to put everything into words.  I don't even talk with my siblings about it all that much, though I'm very close with them.  It tends to be more functional conversations, updates about a recent fall or what we can do to help her on her bad days.  That's just how I deal with a lot of pain, by absorbing it quietly and then trying to move on.  So, to best help your husband I'd start by figuring out what his, for lack of a better term, pain style is and, frankly, asking him what he needs most from you.  It might be long walks and conversation, it might be time alone to work through this on his own, being held silently, or any number of different things.  If you're just not sure, letting him know in small ways that you're there for him are never a bad thing for a marriage.
Supporting the spouse of the dementia patient is a bit trickier.  I'd say that running errands for her when possible and getting her out, giving her someone to talk to about topics not at all related to dementia, are probably the best things you can do.  Also, asking your spouse if he's got any suggestions for how you could help his mother both shows your support and will hopefully take his mind off his own feeling of helplessness.  Since he knows her better, he might have some suggestions for little things that would make her feel better or less stressed.
Are there any support groups in your area for friends and family of dementia patients?

Oh, SisterX, I'm so sorry about your mother.  I'd like to share something I repeatedly read in the Alzheimer's Society literature: try to focus on things your mother can still do.  With FIL it was easy to notice that he was deteriorating, but I tried to bring our attention back to the things we could still enjoy with him.  As things progress each day can seem so dire, but from even last fall we have good memories of family excursions or dinners out we had with him (things that aren't possible now.)  Try to be in the moment and enjoy that your mother can still tell stories about your older siblings when they were babies/toddlers (tell those older siblings that the stories are all about them because clearly they were the rascals in the family!  :)

I took your advice and asked DH what I could do to make things easier for him (and let him know that was a standing offer).  That alone seemed to make him feel a little better (he didn't ask for anything but may later).  I also brought up being physically present more often for MIL and FIL (we live a few hours away).  MIL does have a support group; as time goes on I'm hoping DH will be open to attending one, too.

I'm very sorry you are in this situation which I know only too well...

I'm a bit out of time so I can't add my own experiences in full. What may give you a little comfort is the knowledge that the patients' stress and anxiety usually get better over time because past a certain point they no longer understand what they are loosing or have lost already. The worst time is when they no longer can run their own life, are getting worse each week and know it. Seems this is where your FIL is now...

Thank you, Lyssa, and I'm sorry that you are speaking from experience.  :(  FIL is in the place where he knows the independence and control he used to have and wants to continue living that way (reasoning with him isn't effective due to loss of memory and judgement.) We certainly can relate with him wanting the life he used to have, but can't let him do things that might endanger himself or harm others.  If part of his Alzheimer's worsening is a reduction in his stress and anxiety that would indeed be a silver lining because he's so unhappy now.

I think it's okay to acknowledge how overwhelmed you are feeling.  I think you have made a good decision to secure assisted-living.  We've faced a similar situation in our family and moved my MIL to assisted living.  We like to say that we'll all eventually "fall", but settings like assisted living and memory care units are there to secure a soft fall and help protect a person's dignity.

I think you are on a good path.  I would express some of the difficulties you're having to the geriatric social workers/staff at the assisted living and see what they recommend.  It's good to remember that they have a world of expertise with these situations and can help engage your FIL in ways that are helpful and respectful.  It's okay to admit that you don't know what to do.

Thank you, Trudie.  Even with previous experience in DH's family with caring for an Alzheimer's sufferer, each person is different and the challenges this time aren't ones that they faced last time.  The various professionals involved in FIL's care have given very helpful advice and we'll keep seeking their expertise.  It might be that we just haven't found the right approach; FIL may respond better to the next thing we try and we just need to trial-and-error to get to an arrangement that works better.

SisterX

  • Magnum Stache
  • ******
  • Posts: 2758
  • Location: 2nd Star on the Right and Straight On 'Til Morning
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #18 on: August 13, 2015, 01:14:20 PM »

Oh, SisterX, I'm so sorry about your mother.  I'd like to share something I repeatedly read in the Alzheimer's Society literature: try to focus on things your mother can still do.  With FIL it was easy to notice that he was deteriorating, but I tried to bring our attention back to the things we could still enjoy with him.  As things progress each day can seem so dire, but from even last fall we have good memories of family excursions or dinners out we had with him (things that aren't possible now.)  Try to be in the moment and enjoy that your mother can still tell stories about your older siblings when they were babies/toddlers (tell those older siblings that the stories are all about them because clearly they were the rascals in the family!  :)


I am trying to live in the moment, but that's hard too.  I want to cherish each day because, realistically, no matter how bad off she is this week, this is the best she ever will be again.  So I want to savor those moments.  On the other hand, this is not how I want to remember my mother!  This woman who struggles to find words to speak, who drifts off in the middle of stories, is not like the mom I grew up with, whose wit was sharp and who was never at a loss for words.  I don't want to remember the woman who needs to ask what's going on five times in four minutes, I want to remember the woman who raised four kids and got two master's degrees and whose life was filled with adventure and from whom I got my strong will and stubbornness.  So while I want to cherish each day with her, I also don't want these last years to be the memories of her which I keep.  It's so hard to find that balance.
Your position is not an easy one either.  Good luck to all of you!  I hope you find some peace in this situation.

partgypsy

  • Magnum Stache
  • ******
  • Posts: 3113
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #19 on: August 13, 2015, 02:35:37 PM »
Sorry that you are going through this. I find Pennsylvanians post insensitive. It is a very difficult time for loved ones and family to see their loved one have Alzheimers, and be in distress.
It is also true that sometimes that distress and agitation is the worse at the beginning. They have enough of their wits about them, their self, and so they are aware on some level SOMETHING IS WRONG! Though they can't articulate what it is or get wrong what is wrong. As the disease gets worse this usually gets better.
My husband's grandfather had it, and a friend's father had it. They were both active physical men who when they had it were very agitated and, aggressive. At different times both either had to be restrained and/or drugged on medications because they would assault the staff or other patients. Have the family members meet with the team and ask them questions. If they have concerns, ask them what is being done for it? How can we reduce his agitation? (having familiar things from home, developing a routine, including in the routine things the patient finds pleasurable like music, favorite food, visits, etc). How should I respond to the patient's behavior? The team is there to answer questions as well. 
It sounds like you are doing all the right things, just a devastating disease, and can be a marathon (long term).
The other ways to support all sound like good ones, listening, providing material support like meals, offering to visit, and so on. Everyone responds to distressfull events in different ways so also to keep that in mind and give people a pass you may not in more normal circumstances.

K-ice

  • Pencil Stache
  • ****
  • Posts: 916
  • Location: Canada
Re: Advice on providing support (and coping) with parent's Alzheimer's
« Reply #20 on: August 13, 2015, 05:44:30 PM »
If you can keep your MIL and FIL closer it is better.

I know a couple where DW 76 was put in a home a 30-40 min drive from DH 75.

He made the trip 5 days a week to pick her up, take her "home" for his dinner routine and drop her off again. That's 2h in the car total for a 76y old man for 18 months, 2 winters.

She is finally in a place 10 min away. He is keeping up with the routine, for better or worse.

The long wait was unavoidable due to a bad system & wait lists.

So try to think about what is best for both of them.