Care conference yesterday it was a hard one for me. A lot of it was around how to make her more comfortable she is very anxious and afraid again. So looking again at adjusting meds. Also complains of pain in legs and back she walks crooked at times like back out. She walks all the time and they feel she is just tired and exhausted. I don't really buy that she has always been very active. Going to switch from Tylenol to an opioid. Asked maybe we should be looking at what is causing the pain. Asked them to check her bed, hospital bed and have asked before think the buttons can get pushed it can get out of whack maybe that is giving back pain. Also when she walks now she will just stop and slouch down or try and sit down. I have heard others mention this prior to not being able to walk. I am getting fairly regular calls now that she has fallen maybe 4-5 of them over last few weeks.
Although she has put on weight she is not eating much even things she use to like she says she doesn't like. She will eat sweets, fruit etc. But that is even diminishing. Starting to try and give her boost but really hard to get much of anything into her. Also when i feed her it is like she forgets what to do , open her mouth, close her mouth chew etc.
The conference really dealt with what we can do to make things better for her from following others journeys here bottom line I think her body is just shutting down. We talked about that and I think they agreed. We reviewed the dnr and what they would and would not do. Also head nurse asked if I had thought of arrangements for the end.
When she was able she would tell me when the time gets close I am just going to take pills and end it. Also would say to me at times I just want to die. She would not want to live like this it is not living. However she still recognizes me, she still responds to my touch she is still in there. I fear we are getting close to a more rapid slide as her body shuts down. What an awful time. My heart goes out to you lindylou as I see you are just up ahead on this journey and I fear I am not far behind.
It sounds to me ike you are taking everything into consideration to make your wife comfortable, and that's all you can really do. It's been a long haul for you — you must be tired. Yes, it does seem that her body is shutting down, but I'm heartened to read how the care facility is working with you. I hope you will do everything you can to take care of yourself,whatever will give you rest and peace of mind and strength.
Rona, if she has fallen as much as you say, she could have injured her back or hip so that they are paining her. And pain can make her anxious and frightened and unhappy. My partner's doctor spoke of the "in-between stage" of walking and not walking. I'll add to that there is another additional stage of not remembering that you cannot walk or at least cannot walk by yourself. A difficult period of time to say the least. Then her doctor talked about the "in between stage" of being able to swallow food and not being able to swallow food. Being on constant guard to prevent falling was hard. Eating and not eating is even harder because instead of hyper-vigilence, with food its dealing with the guilt that tries to convince you that you are not doing enough for your spouse.
Don't know if you read the Rumi poem call "The Guest House" that I posted a while back. I'll post it again on this page if you wish. I finally had to say "Welcome, Guilt, to my house. Meet my other friends Panic, Fear, Exhaustion, Worry, Joy, Sadness, and Laughter. You are all welcome guests."
Make your wife as comfortable as possible, Rona. Know she won't be 100% comfortable, but that what you are doing for her is the best that you can do for her. And that has to be enough. Not easy.
Yes I did read the poem Lindylou. To both you and Mary yes I know I am doing my best and I hope I have given guilt it's appropriate seat in the guest house. She hurt her back about a month ago while walking she started pushing furniture around and that did it. Right now just not sure what is causing it can be as simple as sleeping wrong but trying to address it.
One interesting thing she has started to say again that she needs to go home and today told me she is dying. These just come out of the blue. Lunch today wouldn't eat then aid made her a pb and j she eat it then some yogurt then some fruit and small glass of boost. So she will eat if she likes it. But others like the egg salad on coissoint today with soup and salad wouldn't touch. She will let me put it in her mouth then just spits it out? Also didn't eat anything but dessert last night. Lindylou yes sounds like we are at that in between stage with eating swallowing and walking.
Mary thanks for the concern I feel I am taking care of myself I am developing a life outside of Alzheimer's this is what Lisa wanted for me and if the situation were reversed what I would have wanted for her. I no longer go to see her everyday but 3-4 times a week. I also have hired companions who are there for an hour or two most days I am fortunate to be able to do that as it gives me peace of mind and is important for Lisa she does best with one on one. The facility as well are very good they try and give her as much one on one time as they can. Companions coming now more around meal time to help her eat and rather than taking her out may take out for 1/2 hour then just read to her or sit with her to help her be calm. I feel like I am doing everything that I can while still trying to keep my sanity. As you know it is just so hard to watch your spouse slowly deteriorate. I am a strong Person but I also Get emotional I tend to wear my emotions on my sleeve that is why that meeting yesterday was hard on me. I will survive there will be a life after Alzheimer's.
You are doing a great job Rona. She is very lucky to have you. It is so hard to watch them go downhill. And I remember all too well that "in between" stage where he was really not ambulating safely but could still walk well enough that you couldn't always stop him or supervise him--and there were a lot of falls. It does get easier in a way when they can't walk at all. Not that anybody would wish that on them, but it's just the Alzheimers progression. Sigh.
I just got back here . I haven't read the poem, The guest house. My husband is starting his 3rd year in LTC and has just stepped down a notch. He is very unhappy and blames me. I thought guilt had left for awhile, but it was just hiding. The staff tell me is fine when I'm not there and then when I get there, he is so mad. I'm trying not to go so often, I usually go every day or even twice a day. Yours letter makes my guilt lessen as it seems more normal.
I know I can't bring him home, I can't physically take care of him. But after listening awhile, I get to think "maybe I could", does that sound normal
He hates the America's got talent t.v. show and I've discovered I like watching it and trying to relearn to crochet. Magic circle is beyond me.
Bobbie, Here is the poem I referenced. The line I like best is "meet them at the door laughing"
The Guest House This being human is a guest house. Every morning a new arrival. A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor. Welcome and entertain them all! Even if they are a crowd of sorrows, who violently sweep your house empty of its furniture, still, treat each guest honorably. He may be clearing you out for some new delight. The dark thought, the shame, the malice. meet them at the door laughing and invite them in. Be grateful for whatever comes. because each has been sent as a guide from beyond. — Jellaludin Rumi, translation by Coleman Barks
From all I have read posted from others, yes it is normal thinking "maybe you can' but the reality is you can't. Yes, some have successfully brought their spouse back home once they are bedridden. It is also not uncommon for them to say one thing to you or react one way when you are there and then be all pleasant when you are not. I think it is Paul (maybe Wolf) whose wife would tell him one thing but reality was it was totally different. There are others that also have experienced the same situations where their spouse is fine when they are not there but totally different with them.
Glad you are letting go of guilt - stop trying to take it back.
I agree about TV. There are so many shows I like but don't watch with him home or when he is awake cause he doesn't like them or too complicated for him. BBC America is running the 3 Star Trek series and when he is not home I watch them or will go into the bedroom to watch. He won't go in there to watch TV but it is OK for me!
Thanks for reprinting the poem. I know I should shut the door on guilt, and depression. But they just weazle in. This morning he was a bear, later today he was a bunny rabbit. I wish I could just be glad for the good times.
He keeps asking when I stopped loving him, and why I don't love him anymore. The next time he starts, I'm going to say,"I'll never stop loving you----but I sure don't like you now.".
Bobbie, I googled the magic circle for crochet. First one had pictures didn't match the instructions. But check this one out! I hadn't heard of it before. Thanks. I think we can follow this one. http://www.crochet-world.com/blog/?p=7618
BHV I am willing to try. I haven't crocheted in so long, mostly knit.
To care center this morning, and met a new man. Seemed happy to see me and not so angry about being there instead of home. I was there about 2 hours, stayed thru lunch. He thanked me for coming, and said he didn't know what he would do without me. I hope this one stays.
Rona, I am behind you in time, how much I do not know. Watching someone you love decline is one of life's toughest test. Especially for a man who wants to fix things. Like you, I feel that I'm tough. I have had to be with my own medical problems for the past 49 years. We both thought it would be me,in this situation. Never over estimate your steely resolve to persevere. Depression can strike when you least expect it. At least I have experienced it. Thanks for sharing.
And the journey continues. Lisa has become more adgitated again so again going to adjust meds. Always afraid and anxious now has started just yelling at people if they get too close. Result one fellow pushed her the other day lucky she didn't fall. Then day before yesterday nurse was walking with her holding her hand ( she is far better with one on one but not possible all the time) when another resident came up and asked for something Lisa yelled at her the other lady punched her. No damage done but now staff worried about her safely and wondering if placement right for her. I asked well what is the option didn't like the answer. I know others here have had to have their spouse moved I am getting ahead of myself and don't even want to think about that.
Doctor was in to see her yesterday and spent some time with her so he adjusted meds going to monitor for a week then if no change referral to SORT. They are the team nurse neurologist etc who provide advice to dr. About 6 weeks ago they begged off said they felt she was stable and would no longer be involved I questioned that now here we are again just hope we don't have to go to the back of the line again with the referral.
So another frustration dr, whom I liked left about a month ago so new dr taking over been trying to see him but no luck. Set up an appointment for last week the day of got a call that there was a locum In For him that day and did I want to reschedule for some time in October or we could I like to have a virtual appointment later that day. I opted for the virtual so had to download this program then at 4 pm headed into the virtual waiting room and waited there wAs a button to start appointment but it was greyed out so called his office. After being on hold for 5 minUtes was told he is running behind schedule still wirh somebody else and when he is available I will be able to press button and start appointment or she would call be back later when He was available. An hour later got a call back from his office technical problem he went to the waiting room and nobody there so now he is off to another meeting. Not impressed. Going to try again to set up an appointment now that I am over being angry.
This is hard enough without all these other frustrations.
Hard to believe we are here, had the discussion yesterday with nurse they are recommending Lisa be on a palliative watch list. In other words they have done an assessment and feel it is immenint within the next few months that she will need palliative care.. I think just giving me the heads up trying to prepare me I know it I can feel it think She is. Close. Reason she basically has stopped eating and has lost a lot of weight. Still can get bits of food and liquids in her but not much. Changed dr as last one though I think a nice fellow and ok dr but I could never get ahold of him at this point more than ever I need to be able to talk to dr. He is highly recommended and makes regular weekly visits to facility and responsive to requests by staff. Had phone conversation with him yesterday and have an appointment with him next week. We are on the same page. Unless something changes don’t think we have long although still very teary I am at peace with it.
Rona, I was just missing you on the site and wondering how things were with you. Somehow it always seemed to me that we were close on this journey in a number of ways, both in the decline of our spouses and the decisions we had to make regarding their care. Not eating and taking insufficient nutrition to sustain life was one of them. Hard to watch, hard sometimes not to feel guilty about not doing more, hard to know that the end is coming and there is nothing we can do or should do to stop it. Palliative care. Loving her through it. Know that I continue to keep you in my thoughts and prayers.
Rona, what did your hosoice folks use to deside on pallitave care? The benchmarks for pallitave care and was/is there stages in that care? can you discribe pailitave care. It not clear to me what all they do.
Here is an article that explains the differences. http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspx
My husband is with the VA geriatric and palliative care. They are the ones that deal with the day care, home health care when needed, respite for me, and when need comes up more care.
Hey Rodstar, thanks for asking this question. And Charlotte, thanks for this link. I think I found that library years ago, but didnt need that stuff yet. I hadn't looked at it recently. This is much more practical than most of the stuff I have been finding lately. :))
yep, I wish there was another way available. I would hate to see the spammers destroy this site. Maybe Joan can give the admin key to someone she trusts or whatever is needed.
I think, as we've discussed, we all need to be ready to make the jump to another website if need be. I'm so hoping Joan will continue here, but I don't know...the lack of moderating is troublesome. Maybe the writing is on the wall.
Nicky, Someone suggested that we go to a discussion topic called "Spouse or Partner Forum" on the Alzheimer's Association's website. I hope we don't have to do that, but I also would hate to lose track of everyone.
Well the last few weeks have been traumatic to say the least. First in 2013 my bil and sil said that we needed a representation agreement in place to ensure that if something happened to me they would have the authority to act, to make the medical decisions for Lisa. Seemed reasonable at the time so got it in place. A few weeks ago sil pulled it out and said we are the people to be making these decisions. So The medical community now take directions from them. In fairness I am not left out we have been working together and things ok so far but the final decision on things is now theirs. After 10 years of taking care of Lisa you can imagine how that makes me feel. I could fight it but not a quick process and realistically we are near the end and I do not have the stamina or desire to enter into a legal battle at this point i am emotionally drained worn out. Not many decisons now left to be made or so I thought.
WE had a meeting on Wednesday where the facility basicly told us they could no longer keep Lisa. She is in a stage of agitation where she is lashing out. To stay there right now have had to hire 24 - 7 companions she is being referred for another placement so don’t know how long she will stay where she is this can only be a temporary solution. The other day she grabed a visitor, of course the women’s comment was that could have been my mother, I understand. She also punched one of the aides in the breast. OVer the last week or so she has bitten two of the companions. She now continually yells out disturbing the other residents they get angry and threaten Lisa. Have been told The other residents have ended up having to be medicated more because of this. If they say no more she goes to the hospital. The environment, even though called gentle care is far from it too big too much traffic too noisy.
Other’s I have looked at have better layouts but My fear even transferring her to another place can they tolerate her behaviour i don’t want her in the hospital. My only hope she will transition out of this stage soon. What has happened with this with others? I am beside myself right now.
So sorry you are at this point, Rona. It looks like the decisions--whatever they are--are going to be made by your sister-in-law and brother-in-law. Good Lord--families! But anyway, I had Larry at home with Hospice in place and myself as the primary caregiver when we went through this stage. Hospice was giving me an aide for one hour five times a week--laughable, of course. I was making frequent emergency calls to their on-call nurses at all hours of the day and night. He was agitated, yelling, violent (although very weak--couldn't hurt a flea), and constantly trying to walk and having falls--so Hospice or my family or the ambulance would be over to help pick him up off the floor.
One night around midnight when he was punching and yelling and just carrying on, a really good male nurse came out and seemed to be able to deal with him a little better "man-to-man." He said the time had come for my husband to be put on liquid morphine, as the Ativan and Seroquel were not doing the trick--no matter how the dosages were adjusted. (Well, duh! Hell-O!! And for how long had I been saying that? And being blown off.) Anyway, the nurse said the next step would be to admit him to the hospital for a week or so to sort out the medications and get him on the liquid morphine.
That would have been a blessing and a gift, except that Hospice decided not to do that. It must have been the usual nonsense related to money or the extreme fear of medicating patients adequately in case they get addicted, or the patients' families steal their medications to sell on the street. (Yes, I'm still bitter. Don't get me started.)
But getting back to you, my guess is that they're going to have to really up the medications to try to get acceptably safe behaviors. That would need to be done in the hospital, and then perhaps she could go back to the residential facility heavily medicated. This awful, combative, aggressive phase isn't going to last forever--in my experience, Larry just became less and less mobile and less and less responsive--a lot of work, but much easier to take care of--even though up at night a lot--until five or six days before his death he just slumped down in his wheelchair, became completely unresponsive, and was total care in bed with oxygen on and no oral intake until he died.
If it were me, I'd get the best lawyer available and let her fight this battle for you. If you want the name of the one that I used successfully in a similar situation, email me. I believe that if you don't take your rightful legal place, they will only get worse. As for Lisa's present state, I'd want to talk to her doctor about it, preferably in person. I think he is the one with her best interests at heart. Chin and dukes up. We're behind you.
Hi Rona, I'm so sorry you have to go through this. I'm interpreting your saying that realistically you are near the end, to mean that Lisa is close to death. If that is the case, I agree that it doesn't make much sense to fight a legal battle over who has control of her care during this brief period. You might want to talk at least once with a lawyer to clarify this. But even if you did fight your in-laws, and you won legal control of decision-making about Lisa, would it make any difference? It sounds like the LTC facility has decided to kick Lisa out, no matter what anyone wants.
Since you are being included in the process, it might make sense to make a formal request to both the facility and Lisa's doctor for a Hospice evaluation. It would be hard for your in-laws to argue against such an evaluation. Part of Hospice's mission is dealing with the families, and in spite of its many failures (including the disgraceful care Elizabeth*'s husband got), Hospice has been helpful to many of our spouses, especially in smoothing out the rough spots. Mary75* makes a good point about Lisa's doctor probably having her best interest at heart and I think that would be the same for Hospice.
Rona, this is difficult, especially because very few facilities will take her. Has she been checked for a UTI or any other infection. Anything that causes pain can also trigger acting out. It might be the progression but you want to be sure there are no other causes.
Ron, further thoughts: I think you told us that your sister-in-law has caused you trouble before and that, in addition, knows about your friend. You also mentioned that there is a question of money. Some of us (I'm thinking of Nancy B and me, for example) have found that after the death of our spouse, the trouble increased and lasted for a long time. Of all of the grief caused by the dementia, the worst part of it all for me was his family. I'd think about protecting yourself now for the future as best you can.
Thank you all for your comments and support. I have a lawyer and have talked everything over with him. The last thing I want right now is a big fight in nobodies interest. So I have taken a step back and am working with my sil, we are working well together so far. Myrtle I said near the end as the SORT team has said at the current rate they expect something to happen within the year but who knows right! The system needs to find a place for her I have viewed a couple that would be much better, or as Paul has said tucherary care I think may be the answer to get her settled and then back into not the same but better suited facility. At this point it is up to VIHA, VAncouver Island Health Authority to make the placement. Since it is not us but the facility that wants her moved don”t have a great deal of say in it but they know the situation and know what would be the best choice that is first see what they come up with.
Rona, I hope you get things sorted out and Lisa gets what she needs. I've been gone for while but it seems as though there would have been more action around adjusting her medicine to get her moods under control. My husband had a lot of aggression at one point, meaning by himself pitched his love seat over the 2nd floor balcony down to the first floor. They had to call 911 and take him away in restraints but they medicated him in the ER and then he was able to come back and the nurses and Dr on staff monitored and adjusted it there. I know he was lucky because as others have said they usually do that as an impatient. Day by day they watched him and started weaning him off the higher dosages but making sure he wasn't getting overly aggressive. Maybe that's something to discuss with her dr.
So an update sorry for the delay been very busy. After I met with the sort team Lisa was referred to a tiertiary unit actually in the small town I live in. Only 3 units on the island. Anyways took awhile but finally got the word on Friday she was accepted so moved her in yesterday. She had a tough day today but think it will be great, much quieter only 12 residents and always 3 staff on so great ratio. Still have companions coming this week so familiar faces while going though the transition. HOpefully all will work out it is great only 3 km away I can walk or ride my bike. Still very stressful watching this decline right now she still does not sit still or sleep so at times she is falling asleep while walking a real danger of falling. She just will not sit still and trying to lay her down is just about impossible.
I cannot believe the improvement since the new placement. She is sleeping most nights, will sit down to eat which she wouldn’t do for a long time, does not say she is afraid, is way less agitated, is more verbal and seems to understand a bit more of what is said seems more happy it is just amazing. What a difference the change in environment has made. Now the cannibis oil has certainly had something to do with it but low stimulation environment has made a huge difference. So at this point I am feeling much more at ease. NOt kidding myself about where we are at it is just such a relief that she is calm and not agitated all the time.