My hubby was diagnosed with AZ, possible FTD in October 2013...at that time we had mild cognitive impairment...we had an mmse score of 27...as of june 2015 i am now responsible for every aspect of his daily care from dressing, washing, brushing teeth, changing diapers etc...hasn't talked in over a year and seems to be getter more feeble and unsteady as time goes by and his score is 9...I am 54 and hubby is 64...I thought that incontinance would be my deal breaker but when he started wetting himself we got depends and moved on...then i thought that bowel incontinence would be my deal breaker but we just started really monitoring fluid and fibre content and making more trips to the bathroom...I thought that when he didn't know my name that would be the deal breaker but now i don't bother asking anymore...He is on a waiting list for personal care home...my first choice had too little of a wait time and I am not quite ready emotionally for him to go yet so my official choice of home currently has about a year wait with the plan being that when I was reaching the end of my rope I would make the change to my real first choice and hope that the wait is still not too long and that I would be more ready...Also it is a bit better financially if I can wait about another 6 months as then he will get old age pension to help with the nursing home costs...Well today I think I have found my absolute deal breaker....Constant teeth grinding...loud brutal sounding grinding and nashing all damn day long...the largest nails ever on the noisiest chalkboard ever...I bought earplugs today and even they do not drown it out...I am totally stressed and have no patience whatsoever with this new development...my temper is rising and so is my blood pressure...I don't know how some of you have been caregivers for the better part of 10 years or more...I just want this chapter to be done...i have granddaughters that want to come see me and sleepover but I truly feel like I can't even enjoy them cuz I am always having to keep an eye on hubby and I can never fully relax...i feel like i am in a holding pattern and hate it...hate it...I am wrestling with making the switch on care home choices to move up placement...one side says he will have more stimulation there and more people to look after him and of course the other side says i am just discarding him cuz the going is getting rough...my mind never stops...i don't know what to do about this new development...I am not a dementia whisperer and I don't want to be...Hate this life ... hoping venting will make me feel better but i doubt it right now...
I would get back on the list of all places you want and take the first one that comes up. They say we place long after they should have. I think you now know you waited too long - not for his good, but for your health both physical and emotional.
I am surprised you still have him at home. I do not think I could go that long. Yes, we are 7 1/2 years after diagnosis, but he is still pretty functioning. I am like you = tired of my life on hold.
You are not 'discarding him', you are placing him for better care. There will be a whole team to do for him 24/7 what you are doing by yourself. He is dying, you do not want this disease to take two victims.
What pension are you talking about? Social Security and Medicare?
I agree with Charlotte. You are not discarding him...you are just taking care of him in a different way if you place him. It's also bothering me that his condition is impacting your ability to have a relationship with your granddaughters. That's not fair to them or to you. I wonder if medication adjustment--maybe heavier sedation--would help with the teeth-grinding. And if you are starting to have blood pressure issues...maybe it would be wise to seriously consider a placement. It is not going to help him or your other family members if you keel over with a big CVA.
I am not having to deal with the incontinence issues or the teeth grinding etc but I am nearly the end of my rope, diagnosed may of 2012 but symptoms years prior. It is a very long road and I find that at times my patience is gone and I don't respond the way I want. I have often wondering what my breaking point would be I too thought it would be when she no longer knows me or when things like incontinence appeared. Now I don't know.
Our case manager made a comment a little while ago when we were talking about the idea of placement. she said you know once she is placed it will give you the opportunity to be a husband again. Once the stress of the day in day out caregiving is relieved your time together can be more about enjoying that time. Food for thought 29scorpio.
I don't know has Anybody out there who has placed their spouse found this to be true?
Charlotte...old age pension is a government pension given to canadian citizens 65 years of age...there is also a guaranteed income supplement available to people 65 years and older which i think he would probably be able to get...while the old age pension is a set amount the guaranteed income supplement is based on income...i am fortunate in that the province i live in the personal care home rates are subsidized by our provincial goverment so the least you can pay monthly is just over 1000/mth and all meds etc are covered (he's only on 3 atm) and i believe the maximum you can pay is about 2800/mth...also it has been less than 2 years from diagnosis and the decline has been relentless ... i simply cannot believe that the only thing practically that he is still able to do for himself is eat...wouldn't get food unless it's given to him, but he will eat when food is put in front of him...he is also still mobile...somewhat unsteady at times but still can walk and do stairs but i follow him up and precede him down...just in case...but all this has happened in less than 2 years which is insane...I guess I am having a hard time considering earlier placement because with the exception of this new wrinkle, he is very quiet and docile...never agressive, not a wanderer, does pretty much what is asked or needed of him with prompting of course as he never initiates anything on his own...so in light of the difficulties so many others hear have caring for their loved ones it makes my problems seem so much more manageable...except for the new wrinkle...I cannot imagine your 7 1/2 years...you deserve a medal my friend
Rona, I feel your patience problems in spades lol...it is amazing to me how many of us think we know our limits but when the issues like incontinence show up, we deal with them and they just become our "new normal" It is definately a skewed perspective and like many others here have said over and over again, we caregivers seem to put ourselves last time and time again...Lets all collectively give our heads a BIG shake shall we?
Many here have gone much longer than me. My FIL went 25 years but my MIL literally killed herself caring for him. She dropped dead of a sudden heart attack which left my husband and his brother scrambling to find somewhere to place him. We live 3500 miles away so it was mostly his brother. My SIL was diagnosed at age 55 and died last year after 9 years. I would love my husband to have gone fast. I do not look forward to more years of this. His sister started really going down at about this mark then was gone in 2 years, so maybe he will too. He has been loosing more long term memory faster than before.
There are those here like Coco whose husband went quickly like yours. Hopefully they will be along and can share with you. Some do that. Symptoms are similar, but the speed at which this disease goes varies from fast, slow and all in between.
I guess it is because of my MIL I encourage placing sooner. She was in her early 70s but missed her grandkids (whom was the world to her) growing up, graduating, and great grandkids. My husband made me promise not to do what she did. I have no plans if I can avoid it. Since I will be relying on Medicaid I am at their mercy. I live in a motorhome which means helping with bathing and toileting is not possible or near impossible to do - hoping that will mean placement sooner than if we lived in a house.
From Charlotte: "There are those here like Coco whose husband went quickly like yours. Hopefully they will be along and can share with you." Maybe I am one of the members to whom she is referring. I don 't know... it often seemed like it would never end. My husband initially showed signs of being "off" in 2004. By 2009 he had been dx and unable to work. He went through a boatload of docs; mostly because of his age none wanted to venture inside the box of dementia. (He actually had FTD not AD.)
You said: "...but all this has happened in less than 2 years which is insane...I guess I am having a hard time considering earlier placement because with the exception of this new wrinkle, he is very quiet and docile...never aggressive, not a wanderer, does pretty much what is asked or needed of him." Because of the FTD my husband's behavior was very different. He was angry, aggressive, hostile and threatening.
Although I hired a care manager who turned out to be worthless, but that is another story, I never really had to make the placement decision. In April 2012 he had an incident that provoked hospitalization. To satisfy insurance requirements he was sent from there to an inpatient rehab. From there he was sent to an ALF where he unexpectedly died in June, 2012.
So, I don't know how to determine the duration. Did it start in 2004 when things started to go downhill? Or did it start in the mid 1990's- I guess current literature says it incubates for ten years? I know MY life started to change in 2004. The accumulation of my stress, despair, and depression escalated with the backdrop of coping with him and taking care of medical, legal and financial matters. I look through records, especially of those last years and think "how did I do all this?" There was no relief.
29 scorpio, I'm sorry that you are in this position. Our situations have some parallels (I am in British Columbia). My DH was officially diagnosed in September 2012. He had just had his 63rd birthday. He was seen and diagnosed by one of the neurologists at the Alzheimer's Clinic at UBC. They tried two medications, the Exelon patch and galantamine - neither did anything to stem the tide. By the fall of 2013 he could no longer take the mmse test and I placed him in care in March of 2014. I did this mainly because of the delusional behaviour he was exhibiting at night. He would get up and bang furniture around in the bedroom, try to leave through the closet pulling all clothing off the hangers in the process. It terrified me because I could not restrain him physically. I was somewhat fortunate that I did not have to cope with incontinence, etc. as this didn't start until he was in care. He spent three months in hospital in the summer of 2014 after suffering a grand mal seizure and it seemed to take forever for them to get him stabilized; some of that time was spent in restraints because he was so physical with the staff. After his release, he was sent to a different facility where they were equipped to handle him. He passed away in May of this year. Why he went downhill so quickly will never fully be known, I guess. Obviously, he had some variant of the disease. We didn't even notice any symptoms until the late summer of 2011.
I tell you this, not to discourage you, but simply to let you know that there are others who have dealt with quick declines. I'm not sure it is better than the many years of caregiving that some here have experienced. I know I miss him terribly but would not wish him back in the condition he was in. I hope you find good placement soon.
29scorpio, There is no objective benchmark on when to admit someone. When I admitted my husband to LTC 7 years after his diagnosis, he was continent (and he still is, 1½ years later) and he was not aggressive, although he did wander. The reason for his admission was that I realized that I simply could not take care of him anymore. The specific reasons why I could not do that are not important. What was important was that I could not give him the care he needed but there were people who could.
I know from experience that when we start thinking seriously about putting our spouses in LTC, a lot of irrelevant stuff starts floating around in our heads. My advice is to stop with the false choices (being a dementia whisperer vs. just discarding him) and with comparing your husband to others who have been placed in LTC (not aggressive, not a wanderer, does what he is asked). None of this matters. What matters is whether you have to ability (mental, physical, and emotional) to take care of this particular dementia patient. It does not sound like you have this ability. What you do have, however, is a functioning brain, which you should use to select a care center, get him set up there, and help him to adjust to the change. Allowing him to leave your home will be very hard on you - undoubtedly harder on you than on him. We are here to help you along. Please let us know how you are doing.
29scorpio, IMHO when you are ready he is ready. Although in the 4 1/2 years since placement, I have had moments of regret. I also know that I would do the same thing again. Caregivers are people too and we all have different breaking points. Good luck with your decision and no matter what it is we will lend our cyber support. (((Hugs)))
29scorpio, I am sorry you are having to go through this. My husband was only in placement a total of about 18 months. I guess in retrospect he went fast. Like AliM I had moments of regret but as I look back it was the right thing for me. At some point I told myself it is either him or me and I chose me but I know how excruciatingly difficult the decision can be. He was on a wait list for 8 months for a Mediciad bed in an assisted living facility. One thing I would do if you place him is find out if the facility will allow him to stay there until he passes. That was something i just assumed would happen but they called me and told me he had to be moved because they could no longer meet his needs. Moving him was really the beginning of the end for him. My husband did not have teeth grinding or even incontinence although he could not do much of anything for himself. But like Rona emotionally I was losing it and had little patience anymore. I have a small condo and he followed me around and would constantly want my attention while I worked. As has been said placing them is just another way of caring for them and the relationship does improve but the pain of visiting him was always there as just watching the decline was heartbreaking knowing there was nothing I could do. Now that I am in the grief process and having talked with people who have kept their loved ones home versus placement, when it is all said and done, the people who I have met who kept them home tend to have a more difficult time after they pass. That is not to say that is true for all--but I think that when one places you are dealing with the separation of not having them in the house and there is a considerable amount of grief that happens then whereas when you keep them at home one does not feel the enormity of the loss until they pass. Just my opinion. Please keep posting here as you move through this as we understand. God bless you as you make your decision. Whatever you decide to do will be fine as there is no right or wrong answer.
Although 29Scorpio started this thread the comments here address my current situation. So I must thank you all they are giving me strength to deal with what I have to.
Thanks everyone for your insight and comments...since my original post on this our days have been better...a little grinding but he was able to be redirected fairly successfully...so I am thankful to have our "normal" days back...I plan to visit my first choice long term care facility next week and speak again to the social worker there about current wait times and reconfirm information they provided last visit... I will confirm that he can stay there until he passes but I am thinking he can as we discussed them providing comfort care only in the event he takes a turn for the worse...I haven't made my decision yet but then I never make a decision quickly I always seem to have to mull everything over in my mind and arrive at my decision in due course but I believe I am trying to see placement in a more positive light...Today has been peaceful and for that I am thankful.
I had to place my husband in January 2015. He got really sick and was in the hospital for three weeks. I just assumed that he would go to rehab and then I would bring him home, but it did not work out that way. He was unable to walk and had to have a catheter. I realized that I had reached the end of being able to keep him at home. It was the most devastating thing that I ever had to do and I cried for about three months straight. He is in a NH now and I realize just how stressed out I have been for the last ten years. He went through a period of time last month of raging, but he seems to have settled down now. I am able to go and see him and be the loving wife and not the stressed out at home caregiver. At first I could not even figure out what to do with myself. It is easy to feel guilty, but I can tell you that anybody who had the guts to say to me I was discarding him would have had to pick themselves up off the floor. People who have not been there have NO CLUE about what we go through as caregivers. I just remind myself that it takes a team of people to take care of my husband now and I am not a team. The decision had to be made based on what was best for him, and the NH was the answer. I am very lonely with him not being in the house, but I am also relieved that I can sleep through the night. At some point we have to think of ourselves. I love my husband dearly and it was an act of love on my part. We all just have to do the best we can every day. There are no manuals for this disease.
dellmc53, It is amazing, that after placement, we caregivers cherish a good nights sleep. The NO CLUE gang would not understand how stressed we got from lack of sleep. You are doing what is best for him. After placement we just trudge along one day at time with this cruel, progressive disease. All the best.
Lorrie, Hope you can keep your rational thoughts the majority of your day. Guilt is also a stressful feeling. Every caregiver here knows you did your best. Hope as the days go by more pleasant memories will surface for you. Take care.
lorrie*, Your husband passed just a few weeks after mine and I have had the same guilt-ridden thoughts as to whether the placement caused him to go down so rapidly. When the thought comes, I just say stop and think about something else. The brain can only hold one thought at a time. I believe that everyone goes at their appointed time no matter what. I know deep in my heart I did the best I could. Sometimes I wish I had had more patience especially when he was home and honestly I placed him because I was so out of patience and totally frustrated all the time. It was not a healthy environment for either one of us. And like Delimc53 placing him was the hardest thing I have ever had to do-- much harder than his actual death. As I look back, putting him in placement was a death unto itself because they are no longer physically with you. For me I actually went through 2 deaths--placement and actual death. For the 3 days prior to his death though I had my family, hospice, and church support which I did not have so much when I placed him. I had my family's support but I was the one who actually took him to the facility--none of my kids were with me. As AliM said we just trudge along and watch the progression of the disease after placement. I am still standing 5 months after his death and sometimes am amazed that I survived the ordeal. I am grateful it is over and still struggling to find my place now that it is all over. It takes such a toll on the caregiver. Hard to put into words.
Remember that placement decision made is because our LO is getting worse. So it should be no surprise if the decline continues.
One factor is their being in an unfamiliar place and that itself pushes them over the edge. But I am sure if that is the case they were very close to going over this edge whether or not they were placed, it just happened a little sooner.
And some people do better after being placed. I suspect because they get more routine than they could at home and there are more people involved in the care and not an overwhelmed spouse.