Aunt B, I'm so sorry to hear about your husband's passing. It is so kind of you to take time in your grief to help others here.
Lorrie, CO2, I relate to absolutely everything you've said. Today I was looking at the other wives who come to see their husbands, and they all seem so much more together than me. I can barely keep from sobbing the whole time I'm there. Maybe it's because their husbands have been there longer (two of them for 4 years). The other day we sat at lunch with a resident whose husband comes every other day to feed her lunch. She is completely unable to move or communicate. I asked how long she's been there, and he said 6 1/2 years! Another resident had to be moved from the center because the money ran out. Friends ask me how long my husband's life expectancy is, like they are hopeful (for my sake) that it will be over soon. I'm not sure how I feel about that, because I just want to scream that this is my husband we're talking about, not some stranger I take care of. I am nowhere near ready for him to go, but no one seems to understand that except all of you here. Thank God I have a place to come where people understand!
Don't know if anything I said made sense, but I thank you all for listening from the bottom of my broken heart.
What a callous question!! When I am taken aback by tasteless questions and I don't know what to say, I have a stock response: "I beg your pardon?" (Said like a grande dame in a movie). That usually shuts them up. If it doesn't, then leave the table (gracefully and with a smile, of course) or if that's not possible, turn your back and focus on your husband. Your job is hard enough without having to deal with rude people.
It seems unreal but my husband just seems to get worse. Now he has cellulitis in his hand. They are treating it with strong antibiotics.
I am very pleased with the Sunrise Alz facility he is in. The staff is attentive, caring and kind. The Drs , nurses and care managers communicate on a constant basis. I also have had private agency sides gif the first three weeks. I have now found one very good aide who will come steadily three days a week. He cannot feed himself, walk, communicate, is incontinent ... Basically needs constant 24 hr care.
Spoke to dr and rn to see if they confirmed my thoughts that he is in late stage, severe stage , stage 7 whatever name you want to give it. YES he is and do rapidly, Zmost of the time , it feels unreal. But, then, sitting looking at him, The tears come .
I have o energy after I visit him and need to sit on couch mindlessly with tv on .
They are going to have him evaluated by Dr and vns to check swallowing and possible hospice care. I've learned hospice for Alz does not need a diagnosis of months to live. This could home on indefinitely., I've read you can be in this stage for one to five years????
I know I've been rambling, but any input from will be greatly appreciated.
Lorrie, There is no advice I can give you, but I do offer my support. In our case, I love my husband deeply ... I love the person he was, and still is somewhere deep inside, but witnessing all that he has been going through, knowing there is no possibility of a good outcome, I pray that he will slip away and finally be at peace. To me that would be the greatest gift.
Lorrie, the time does come, sooner or later. There is nothing you can really do to slow it down. Hospice is a good idea for comfort measures for your husband. Please think about pacing and caring for yourself as best you can.That means good food and no missed meals, rest and restorative breaks, which can be as simple as going for a walk, or watching a movie or favourite TV program. Sidestep conflicts. You will need to conserve your stamina as best you can. You are both in my prayers
Thank you for your sound advice and understanding.
When I visited him today, he would not eat or drink at first. After a long while, he ate an infant size portion of puréed food. He just alternated between closed eyes and vacant eyes. Made strange sounds like tying to clear his throat As he sat rigidly in his wheelchair. I did get a little kiss. Very heartbreaking to be with him, I silently thought it might be best if he just slid peacefully away. How do we continue to witness this death while aive???
Lorrie, I agree that this is heartbreaking. I'm so sorry. I remember when you placed your husband and how awful this whole experience has been for you.
It might help if you got some straight talk from a doctor or a nurse. Unless you know the significance of the symptoms you're describing, you don't know what to expect or when. I take it that the promised swallowing evaluation has not been done yet and that hospice has not appeared on the scene, either. Is there someone at the facility during the weekend who can tell you when the swallowing test will be done and when hospice will show up? It's awful to have to watch someone you love go through this without any medical advice. Please let us know when you hear anything.
Lorrie, I agree. This is very hard. A friend of mine is at the very end of this journey with her husband, he hasn't eaten or drunk for a week and is managing to hold on beyond everyone's expectations. It is eating her alive to see him like this. But she manages, taking events minute by minute at this state. Fortunately she is getting support from family and friends. It would be best if she and her husband and kids were spared any more. For her it will end in a few days.
The staff prepared him for bed at 8:17 p.m. He appeared fine. When they checked again around 9:00, they found he'd died in his sleep. The last week or so, I had the funniest feeling when I was with him. It was as though he'd given up and didn't want to "fight" anymore.
Shocked and heartbroken but if there can be any blessings, he died before he reached the final stages of Alzheimer's.
He was in NH seven months.
I write to tell this news but, also, to say to everyone that you will continue to be in my thoughts and say thank you for all the feedback that helped me through this difficult time.
I am so sorry for your loss, but I agree that is was a blessing for Bill to go so peacefully. I hope you can finally get some rest and peace yourself. I will keep you both in my prayers.
Your kindness and support have overwhelmed me with thankfulness for a site such as this.
Please take care of yourselves too. I've read the difficulties and challenges each of you face and admire your strengths and courage. I was physically and mentally exhausted after only seven months.
I intend to check back often to see how everyone is doing.
Patsy, I would like to add my condolences. My first thoughts are always ... no more pain, no more confusion ... he's whole again, and at peace. Kindest best wishes.
Dear Patsy, I'm so sorry to hear of your loss. You are in my prayers at this difficult time. I agree with you that it was a blessing for him to slip quietly away now and be spared the last stages.
Is Wolf okay? We haven't heard from you in a while, Wolf. Check in if you get a minute, okay?
I also want to ask if any of you have been to a support group. There is one at my husband's residence once a month, and it is the only support group I've been to regarding my husband. I am unsure if the people who attend just like to put a happy face on in public, or if they are truly as well-adjusted as they appear, but I feel like I am the only one there who is falling apart from grief. This is the only place I can hear from spouses who are either coping (or not) the same way I am (or not) or who are willing to be completely open about their experiences and emotions. Has anyone else gone to groups like this?
Joni1957, I have attending support groups since husband was diagnosed 6 years ago. But I am to the point that most of the people in my group are dealing with parents rather than spouses and as we know it is very different. I have made friends there but don't really see or hear from them other than at the meetings. I too am dealing with grief and not getting too much support so I probably will not go as often. I am thinking maybe a grief support would be better except he is still living but I am grieving anywat.
Thank you, CO2. I know what you mean about people with parents. One girl whose father is in the residence told me that I should realize that I am not responsible for my LO's happiness. I politely told her that it's different with a spouse. For many years, we have been responsible for each other's happiness. She admitted that it's different with a parent.
I have also thought about a grief group but wondered how they would feel about the fact that my husband is still alive, and decided against it. But what I'm feeling is definitely grief. This website is the only thing that helps to make it bearable. I like my therapist but I only see her once a week. I can come here 24/7, and it helps a lot.
Hi Joni, thank you for thinking about me. I hope you're doing ok.
If someone asked me (which they didn't) what I would deem the minimum level of a mutual relationship to be - it would be that both are getting fairly equal benefits from it (unless you're a masochist in which case you're happier the other way).
If I met Dianne today would I be interested? No. If I just saw her for the first time I would estimate her age at 80 and not the 63 she actually is. "She needs to be wiped", they would explain.
Time and again the point is made that things are changing for the worse (there are zero exceptions to this). Most of us catch on that our spouse is going to deteriorate and die shortly after diagnosis. Many of us understand that as the disease progresses there is less and less of their personality in there.
Many here are mothers. They have experience with this. They actually made the child in their own body. They give birth to it (OWWW!). They nuture it and care for it while the child moves further and further away from them towards an adult with their own life. It's the way this works if you do it right and it's the way it works if you don't.
Having Alzheimer's together is one of the hardest roads in life. I would only look for that objectivity away from this board or any other AD group. Watch the voting among 'normal' people especially after a short primer and see what experience they want the least. AD is always near the top.
One of the reasons is because either we have to voluntarily let go of 'us' as the initiator, or we keep putting our feelings into a vessel that can't hold that and keeps getting smaller.
Many of us already have experience with that too. The day came where I frustratingly realized I could no long treat my father like my father or my mother like my mother. I had to transition to a role more like a helper and then a parent where my sister and I decided what should be done even though they were still our mother and father.
It was very hard to let go of that and change with reality. My sister still struggles. She was better than me at getting involved up to her elbows but she can't transition inside. Instead six years later she opens the boxes of mom's stuff and is intoxicated by the "smells". That is not healthy. It is not real. And denials at those levels don't go away easily by themselves.
I loved my mom just as much I think. I believe I think about her more and more freely than my sister does because when I think about mom I don't have emotional reactions any more - instead I enjoy the memories.
I find this paradox with simpler and easier things in life too. I have friends who I joke about but who really do have bad reactions to talking about getting older and who even ask to change the subject. Feeling like vomiting because we can't face basic reality is sad. It's also bizarrely too self absorbed and the equivelant of killing yourself because you're afraid someone will kill you.
Echoes and examples of this are everywhere. People coming to whatever point in their experience where they either change within to accomodate or change the memory to suit. The first is harder and messier while the second is more like things disappearing in a bog and then avoiding that there is a bog.
One involves the pain and anguish of changing how we see the thing we desperately do not want to change and the other builds up pressures inside that actually want release and seek release.
I still love Dianne, but more like a mother watching over a doomed child. What was 'us' is in the past and was ended long ago by the disease. It's taken years of purposefully feeling that pain and anguish to arrive here. Years of getting that and then flinching away and having to do it again.
I can see that one day I might fall in love again. I never believed that until recently. There are a lot of worthy people out there and these days I feel that and believe it. That works with friendships too. My horribly mangled sense of trust and risk/reward feel like functional arms again I can engage with - not just the stumps of pain and hurt they were.
I challenge anyone here to get away from the weasel words like 'accepting' and instead spell out specifically what accepting Alzheimer's finally actually means to you.
I'm quite aware that the things I've been saying here and this last year are things that if I had read them when I wasn't ready would have turned my stomach. There was a time any thoughts like that were betrayal. I wouldn't have known back then that they were denial.
The time will come especially for people on this thread which may come for my sister one day. Using her own values, mom's only real concern looking down would be that her daughter tortures herself because she won't accept what happened six years ago.
We had a fantastic life together and were unforgivably lucky overall. I wrote her obituary here on July 03 last year and I said goodbye to her that August. I've been at a point in my life for months where I miss her but I think it's unhealthy to keep dwelling and frankly I haven't for some time. I had serious reactions when she went into palliative care and I HAD to go out and arrange her funeral in December but that makes sense.
There are no whys left. There is my rich past before her and my rich past with her and my rich future. My problems coping with that are easily equal or less than the problems everyone around me has.
Thinking this may not be true is the same as saying no one gets over bad things that happen. But we do.
Vicki* It is good to know that from your experience we can get over it. Wondering if anyone else has had issues with having to move your husband once they are placed. I have him in a ALF locked dementia unit now for 16 months and was told he needs to go to the LTC facility because they can no longer meet his needs. I am waiting for the insurance to get approved and God willing that will come before the end of the month which is when I have to be out. Went for a short visit today. He seems no fragile now and seems so out of it. He is still walking but constantly dozes off and can hardly speak. Some of this is due to the trazodone which has helped his sleeping but he seems like a zombie most of the time. It is so terribly hard for me to go. I want to bring him home but I know it will literally kill me. I know this will be a huge adjustment for him and wonder how that all will go. I keep telling him I am doing the best I can. It takes all I can do to just get through each day. I spent all day today with my son getting the taxes done. Thank God that is over with.
Wolf, thank you for checking in with us. I don't yet believe that I will ever reach that level of ability to face the truth and keep going, but I believe you have reached it and that gives me tremendous comfort. I know now that all the years of caring for my DH have taken an enormous emotional toll on me, especially because I never allowed myself to feel anything emotionally WHILE I was taking care of him. I had to hold it all together for so long because there was so much to do all the time, especially the last year when we were in the ER every other week. I will admit now that I was hoping I would somehow be spared from ever having to feel my feelings about it, because I'd rather have a sharp stick in my eye than to go through what I'm going through now.
Wolf, these words are so profound, I have printed them out to hang near my computer: "Feeling like vomiting because we can't face basic reality is sad. It's also bizarrely too self absorbed and the equivalent of killing yourself because you're afraid someone will kill you." Thank you for that.
CO2, I'm sorry you have to go through a move with your husband. I hope you have a place picked out for him, and will keep my fingers crossed that you hear from the insurance company soon.
CO2...good luck with the move. When my husband went to the hospital for the last time the home where he was had told me that they didn't feel as if they could meet his needs any longer. He would have had to go somewhere else had he lived to go back to LTC. I was already fearful of where he would have to go because I visited every day and I was so afraid that it would have been some place too far away to accomplish the daily visits. The place where he was prided themselves on being a restraint free facility. I am not sure that this is always in the best interest of every resident. I have his wheelchair which had a seat belt on it and he couldn't use it there. It would have served as a reminder to stay seated. He could not remember that if he got up alone, he was very likely to fall. I didn't see it as a restraint but they did. I wish you the very best as he makes this transition and hope it works out for both of you!
You make a good point, AuntB*. The LTF where my husband is has a number of residents in wheel chairs. Not a week goes by that someone forgets, tries to walk and ends up falling. There are always residents sporting lacerations, bruises and even broken bones. A seat belt can be a reminder not to get up that could save a lot of ER visits. I think the constant falling is worse than the concept of "being restrained."
I'd like to have a chat with the do-gooder who passed that legislation without thinking it through.
Aunt B* and Joni1957. Thanks for your comments. I just got a letter from Medicaid saying his coverage was stopped. I spoke to them 3 weeks ago. she told me what to fax in. I did that but obviously they never received it. I am calling in the morning. I am so worn out by all this. He has to be out of the ALF the end of the month. I half thought about bringing him home as I am pretty sure Hospice would help but they told me last night he was up 10 times dressing and undressing. I would never get any sleep so that is not an option. He still is wanting to pace all the time and I know would never stay in a wheelchair without restraints. Today I visited and noticed that he all of a sudden put is right arm up in the air like it was frozen or something. I know there is a name for this but cannot remember. I do not even think he is aware of it happening.
The ALF where my husband lives has residents who need to be in their wheelchairs. Instead of a seat belt, they use a tray - very much like a high chair tray. It successfully keeps them in the chair and is not a restraint.
My understanding is that an ALF cannot force a resident to move out if that resident doesn't have a new place to move to. This was done to my wife and thankfully we were able to move her before the deadline. But if I couldn't find a new place I was not going to take her home (the ALF made clear that they thought this was an option). You do need to show that you are looking for a new place.
Ended up taking him to the doctor yesterday for bleeding hemorrhoids. Anyway doctor increased the trazadone due to not sleeping so we will see. She also confirmed that he needs more care and that the move to the LTC will be a good thing. My son picked him up and was shocked at how much he has declined since he saw him last. He does look like a very old man. he now can barely walk. The steps keep getting smaller and smaller with more shuffling. Now he cannot remember how to get in and out of the car. When he gets to the LTC I will not have to take him out to the doctor anymore as the doctors come to them. For anyone whose DH is not walking, was it a sudden thing or more gradual? I see his decline becoming more pronounced and seeming to go faster.
In the last 6-9 months of his life, I had trouble getting my husband into a car (It was as if he couldn't "fold " himself to get in under the roof), and his walk had deteriorated into a shuffle. He was 90, died at 91.
CO2, my husband was walking, doing housework, was partly incontinent. He started to throw up one day and fainted, went flat on his back. Spent 10 days in hospital with a bleeding ulcer, then to LTC facility. Could not talk, walk ,feed himself or anything after that. It was so sudden, tore my heart out.Seems the disease advanced severl years in a few seconds.Doctors didn't seem concerned. Guess it was nothing to them,no expl;anation .
My DH also declined swiftly. He was walking , even running in alf from August thru October. Then, he went to Geri psych for med adjustment. His motor skills including walking took a sudden downturn. Since January , he is in New Alf no longer able to take a single step! They decreased meds by half. That did not help his motor skills. He can no longer use a utensil and must be fed.
He is 67 and now also looks much older. This is heartbreaking. I don't understand this quick decline and wonder how the disease will progress.
In the last month or so, my husband has declined. He is incontinent, and doesn’t know if he has to go to the bathroom or not. He was right-handed, and now that hand is swollen, and his right side is problematic. He needs to be fed, and I arrive at lunchtime to feed him, and stay until he’s in bed at 8 p.m. with his medications. For me it is what I WANT to do… the staff are caring, but overloaded many times, and, for me, it is a labour of love. I need to know that he has settled. Now he doesn’t cry when I leave, but stares into space.
I am so grateful to the BSOs, who cared, and gave me a clue to the triggers that set my husband off with noisily singing, (not really singing) … these triggers being toileted, bowel problems, fear, etc. I practice the techniques of gentle touch at least twice a day, sometimes for an hour and a half … but I gain the benefit of knowing it is soothing to him. Generally, I always hold his hand, making that contact.
He is now mostly in his own little world, but toileting or coughing (in the past 2 weeks) set him off again, and he begins to ‘sing”. Generally though he is quieter.
I made the decision (after his last 9 days in hospital about a month or two ago) that, knowing there is no good outcome, I will not subject him to all the tests and stress involved.
As you experienced, Mary75*, the last year before entering LTC was difficult when taking him to his doctor … trying to get him from his wheelchair into the car was so difficult because of his inability to bend/move, and he’s much bigger than me.
I know now that he has moved on, is in his own world, but still recognizes me as someone who looks after him … I only hope that I outlast him, because I feel he really needs me.
Mary 75*, sometime I would like to contact you about your problems with RBC estate matters. We also have RBC, but I have always kept DHs assets in his own name, for his own benefit. I am his main beneficiary, and have been told that if he goes first, there will be a drastic reduction from the tax department. If you are interested in corresponding, I would appreciate it. If not, I will respect that.
I just lost a large post, so here is a summary: I'll post my email on my profile for 24 hours, if you want additional info. If I were you, I would email my accountant and stockbroker questioning this statement of "there will be a drastic reduction from the tax department." Copy to each. Maybe include your lawyer. Tax laws change, and their combined experience will give you the most accurate picture. I will be forever grateful to these three professionals I contacted. They know me personally, and there was no charge, but money can't pay for the peace of mind they gave me. Based on my experience, I have decided not to use a Trust Company to handle my own estate. Instead, I have appointed my youngest son and my lawyer as co-executors.
I have been able to bring Kevan home overnight for a time but that had to stop two weeks ago because he was having terrible nightmares when he was here. I have been bringing home for the day since then but just a couple of times a week. It went well until today. He became very anxious, slept in the big chair off and on. We had a nice lunch, watched a game show then he went for his nap. He didn't sleep long today and came downstairs looking rather stressed. I asked him if he wanted to go home and he said yes so we left. On the way there he became very upset and said he wanted to cry. When I asked why he said" I wanted to tell you something and i can't remember it now and it is so frustrating." I told him to just sit quiet for a moment and maybe it will come back. He said"it doesn't' come back anymore" he was crying. I told him maybe it is best if I come there now instead of him coming to the condo and he thinks that may be best from now on. He said maybe I can just come for a coffee, like one hour or so. We are going to try that or just go to a place near him for coffee. He is having trouble sleeping and does number and word sequences for hours from about two a.m. to about four. They tell me he is sleeping when they check him during those hours.
I can't begin to imagine how hard this is for him. My heart just breaks watching him deteriorate like this.
Oh, Jazzy, that sure must be hard to watch. By adjusting to these changes, you are doing exactly what you have to do - trudging right along beside Kevan and helping him bear what has to be borne, even though it breaks your heart. Hang in there; we are with you.
Have any of you had this or similar behaviour? Things like the fear and stress ups and down and all over. They gave him an Ativan when he got back to his floor at three then another at five. I just spoke to him and he is acting alright now and is telling them how to save money on electricity. I'm just at a loss at this kind of behaviour. Is this normal for a dementia sufferers? Now some folks are calling him the mayor of level M4. He seems to want to run everything.
My husband also had FTD. Generally he was not assertive in the ALF. He seemed to have more interaction with other patients in the rehab facility. He went from hospital to rehab to the alf in a matter of weeks. Yes, he had many fears. At a point he was unable to articulate them. Kevan seems much more verbal and interactive than my husband was by the time he left home. Ativan was used each and every day for years.
One thing I want to mention is that I caught your mention of coffee. My husband was an enthusiastic patron of coffee. Whenever, wherever; he enjoyed it very much. The time came when it was advised that he not have caffeinated coffee. This was aimed at his anxiety and related behaviors, but also at caffeine's effect on Ativan. It was explained to me that as the disease progressed my husband developed an ultra sensitive reaction to caffeine. Of course I can't know if any of this might apply to Kevan but I just thought I would share with you this part of my husband's experience.
Oh my!! Kevan drinks two or three coffees a day. It's like an addiction. I was able to get him to drink herbal tea after dinner but not give up the coffee. I'll check with my pharmacist to see what adverse affects caffeine has on him and then I will have something to show him.