I have been reading this site for months now and can't believe how much I have learned from fellow caregivers. It is a form of comfort to know you are 'not alone' out there. My husband is 61 and has been diagnosed with Alzheimer's since 2008. I am still trying to work 'on call', use home care for the days I work and use day care one day a week. He is occasionally incontinent (I have to ask him to 'sit', and then he usually goes) but if I miss it, he cannot do this on his own. The thing I find the hardest is that he cannot understand instructions anymore and I have to deal with his anger. I have tried 25 mg. of serequol, but do not like the after effects of this drug. The other hard thing, the hardest, is considering placement. I am on a waiting list for the fall but do not know how I can do this. I lay awake at nights fighting with myself. As many have said before.... I hate this disease! Anne
So sorry you have had to join us. I hope you can find the help you need here. This is the best place I know. I never had to place my DH. Our journey went so fast. Dx to end was less than 4 years. But I thought of placement. Our youngest DD is still home and did not want her dad placed. And as long as I had her help I did not mind having him home. I was lucky, no incontinent and no violence.
Sorry about the anger, I am sure someone here can help. Weekends sometimes can be slow. So don't give up if not many respond.
Has anyone out there felt 'pressured' into putting their LO on a waiting list. I get visits from the long term care 'nurse' every six months to do financials for services I get and every visit, I get the pressure talk. Now his name is on a list, I feel awful again. Some days are good and I think, no way, other days....I think its time. However, Im certain he will not get as good care in a facility as I can give at home. Its just that Im afraid to leave him anymore and feel my world getting smaller and smaller. Some retirement! And Im not even 65 yet!
Remember, I never did placement. But knowing what others have gone through… Better to be on the list and not need the bed when it come open. Than find you need help and now have to wait. And we all tend to wait to long for placement. Also you are still there to help with your DH care even after placement. So many find they have a clearer head, better thinking and more patience with their LO after placement. You can still have meals with them, walks, visits. Most still visit daily.
Welcome to my website. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". Since you and your husband are so young, you may find the section on EOAD (Early Onset Alzheimer's Disease) helpful to you.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
I am not sure what you mean about the long term care nurse. If you are going to be paying privately, and are not involved with Medicaid, and have looked at one of these places, then you are being pressured by a salesperson (regardless of what title she gives herself) because they want your money. Unless an illness or emergency puts your husband into the hospital, and you are unable to take him home to care for him, then the decision as to when it's time for placement is up to YOU. So many of us have asked that question over and over again - when is it time? The answer many of us ( and it is an individual decision except in the case of hospitalization as I mentioned above) come to is - when WE, THE CAREGIVER, can no longer do it. Unfortunately, most of us wait too long at the expense of our own mental and physical health.
If you do not feel that he or you are ready for placement, have you considered increasing his Day Care days to 3-5 days a week? That can be extremely helpful for both of you.
I can relate to your age situation. I am 6 years younger than my husband, meaning I was 54 when this started 11 years ago. He was 60. It can be very difficult to find activities and peers your own age in your same situation.
Again, welcome - you have come to the right place.
abauche...welcome. Is the LTC nurse from a LTC private insurance company or a government assistance program like Medicaid? In any case, it is your decision, not hers, so perhaps you should tell her politely you'll consider it and to let you make that decision when you're ready.
Now that you've put him on a list, doesn't mean that you have to place him. When my husband's name came up they called, telling me that they had an open bed. I told them he and I were both not ready and to go to the next person on the list. They kept my husband on the same place on the list for a year. Each time they called, I told them he wasn't ready. After 1 year they wrote to me telling me they were removing him from the list and that I could put him on at anytime, but his name would be on the bottom. Thankfully he's still at home and we are managing with a private pay aide.
My husband has always had anger and aggression issues since his dementia diagnosis (FTD) and to manage his behaviors it was necessary to use the anti-psychotic medications. They have worked for him...controlled is anger and aggression while providing a decent quality of life for us both. Although I did not make the decision lightly to put him on Seroquel, without it he would certainly be institutionalized (NH or worse, NH for criminally insane). It has been a God-send for us both. Life is full of choices, but what it came down to for me was if there was a medication that could give him a good quality of life (control the anger, aggression, violence) and allow him to be home longer, then it was worth it. He's been on Seroquel for almost 6 years, has had few if any side effects and I don't have to live in fear that he might harm me. It's been a good decision for us.
The difficulties of AD and the dementias are beyond description at any age. My husband was hit with FTD during his 40's. He never imagined his career would end in that decade of his life.
Of course, no one can judge better than you when and if placement is the best alternative. You mentioned you feel strongly that your care at home is better than care at an institution. In my case it was the opposite. Although his time in placement was brief, he required a two person transfer. Behaviorally he was generally better among others than alone with me.
It was challenging for me to find placement for my husband considering his age- yet it seems that your situation is quite different in that respect. My guilt centers around not being able to afford the ALF's where I would have most liked to have him placed. In terms of remaining on the waiting list, I would say it is better to have it and not need it than need it and not have it.
For anger, anxiety, and general behavioral issues, the go to for him was lorazepam (Ativan). At all stages, it really proved better than anything else tried.
You've been coping with this since 2008- you will make the right decisions for your husband and yourself.
Thank you all for your caring comments. Just so you know, I live in Canada and not sure of the differences in our systems. The day care in our small town is only 2 days a week and will have to apply to get another day. He doesn't like to go but seems fine when I pick him up. Also, the dementia ward in the seniors home in our town, is a private facility with some subsidized beds (which is the only ones I can afford). The nurse works for the health authority. She is probably not pressuring me, but looking out for my welfare. yes, I will wait till I feel the time is right and realize I will still be a caregiver even if he is there. I have always drawn the line in the sand that I tell myself I won't cross over and when that occurs..... then I step over it and carry on. He doesn't talk much anymore and cannot express himself or tell me anything and when he tries, its word salad. I feel lonely a lot and wish he would at least show gratitude for the care I give him. He is also diagnosed recently with type 2 diabetes, so I do my best with food, but its hard because he only likes 3 things, food, music and walks. That's it. Great to get to share my feelings with like minded people.
42 years of marriage and my husband rarely expressed gratitude. The last year he has been saying thank you more often but I don't like it. My husband was diagnosed in 2008, also, but is still pretty high functioning although he no longer drives, short term memory is gone, long term is starting, and most notable change is having trouble finding words when he was to comment about something. He is 66 and I am 61. For me I can't wait for placement which I am thinking will still be a ways down the road.
Welcome Abauche. You r among friends here who truly understand what you are going through. Having him on a wait list is very wise. Altho you may not be ready now but by the time the room becomes available you may be ready. That is what happened to me. I did not want to place him. I do not think anyone does. But at the same time I knew in the deepest part of my being that I could not continue this way. My frustration and anger and lack of patience were becoming a way of life. I had tried daycare, respite, home health people, volunteers from hospice who visit, the community senior center. I knew the atmosphere in our home was not good for either of us. All the previous posts are correct. It will be YOUR choice and you will make the decision as to what is best for YOU. Placing my husband was the hardest thing I ever had to do in my life along with going through the Medicaid process and altho it is not over I have definitely become a much kinder and gentler person towards him and for me that is what matters. This disease is not his fault nor is it mine but I can do nothing about it . After I placed him 8 months ago I never realized how much I was doing until I did not have to do it anymore. It will be the same for you. I am not learning how to love and care for myself. To love them through this, we must love ourselves first and make the decisions that will best accomplish that. For some it is keeping them home and for others it is placement. My husband is still able to use the toilet but literally gets lost and does not always know where the toilet it. My husband also has word salad--that is an excellent description of the way conversations go. I am fortunate because he is appreciative so what I do and never complains and has not exhibited many of the behaviors that others have. I am so grateful for that. In 8 months he has declined quite a bit and I see him wasting away mentally and physically. I am bringing him home for Easter with the family because I do not know what next Easter will bring. God bless and I will be praying for you. Whatever decision you make will be the right one and if you make a decision and it turns out to not be correct you can always change it.
welcome abauche. like the others mention having him on the list is for your convenience in case you choose to use it when the bed becomes available. you can say you aren't ready but better to have that comfort just in case. many Canadians here who have more info on your heathcare system. its good to have a website and friends who know how you feel. some are new members, inbetween, and others decades of caregiving. lots of info in past topics as well. divvi
Welcome abauche from a fellow Canadian. I live in Toronto. You will learn so much from the wonderfully supportive people on this site and not feel so alone on this journey non of us want to be on.
Hi, I'm Nancy and my husband has been diagnosed with Mild Dementia. He is 71 and I am 70. We moved to Scottsdale, AZ in 2002 from NJ. The move was to be our retirement address. By 2005 my husband was diagnosed with a brain tumor, non cancerous, size of a tennis ball wrapped around his brain stem.
During his 9 week stay in the intensive care unit at Barrow Neurological Institute, my husband had 2, 12 hour brain surgeries to remove the tumor, then a blood clot and mild stroke at the site of the tumor, another 8 hour operation, then a bout of Meningitis and a Staph infection. He is also a recovering alcoholic and prescription drugs abuse.
Consequently, 8.5 years later, Feb. 2014 the doctor explained that due to all the assault on his brain, hence the Mild Dementia. It was also suggested that we make an appointment at the Banner Alzheimer and Memory Clinic for a further work up. Our appointment is in May 2014.
Thank you all for your heartfelt stories, your sharing and in-put. It has helped me become more informed.
welcome Nancy2014. sorry for your need to be a member here -any of us would prefer not to need this site. but for those of us who are dementia type caregivers its a blessing and a wealth of information. there are many topics past you can search for and a colossal amount of handson caregiving stories and help. many have just joined like you, some are mid stages, and some of us are in end stages after decades of caregiving. and some have lost their spouses and continue to provide support and input for those behind. others will be along to welcome you = welcome. divvi/tx
I did not have to place my husband but as his health began to become more and more delicate, it was a concern. Earlier on, our neurologist told me to become familiar with what is available because there are waiting lists and one does not want to find themselves in a critical situation where placement must happen NOW but investigative work was not done ahead of time. There is no harm if knowing what is best suited for your needs now or if need be with changes what is out there for support. I did this and was glad I did. You need to know the costs, rules etc as places are different.
Thank you for the info. That is exactly what I am in the processing of doing, putting all of our financial matters in my name alone. It's not an easy thing to do to an adult, however I realize that my LO's cognitive and decision making abilities have declined drastically. He graduated as an accountant from College, always good with money and BAM, the last 3-4 years, well lets just say 1+1 was not equaling 2 anymore. More like thousands of dollars on ebay, "OUCH!"
I should have dealt with this behavior then but as they say, "shoulda, coulda, woulda," I'm doing it now and that's what counts. So far he is being compliant, not happy about it, but not acting out about it. That's a good day when he dosen't act out about some insignificant issue.
nancy, my spouse was a double major in college...economics and mathematics. Always great with numbers, finances, etc. Until he paid the same bills twice, some not at all for months, didn't pay credit card bills, resulting in a cancellation after 20 years of no late fees. Oh, did I mention the $15,000 out of my checking account which couldn't be accounted for? I could only trace about 1/2; I have no idea and no records for the other 1/2 (he was writing checks/paying bills from my acct with my authorization). Ruined both our credit scores/ratings. Just now after 6 years of vigilant on-time payments, no balances, no new credit cards has MY credit score ALMOST reached the score before he ruined it (I've always had excellent credit scores until 6 years ago). His is still a work in progress. Thank god we haven't needed to borrow any money or needed a new credit card during that time. Mismanagement of credit and finances lives with you a very long time.
I read on these threads from way back that it is a good idea to leave the spouse's name on one bank account. I was glad I did because it makes tax refunds, unclaimed property, and any debts owed much easier to deposit. You are all right about moving the majority of the assets into the well spouse's name, but back me up here If I am remembering correctly about leaving the name on one bank account (it might have been after the spouse died and the advice was to not close all accounts with his name until the estate was settled).
I did both. I don't remember if I posted about it but this is what I did: When issues started developing like those above I started by establishing accounts in my own name. First a checking account, then credit card accounts and finally investments. My husband was not an authorized user on any.
I had been an authorized user on his accounts and took my name off.
What remained was one checking account in joint names that had existed for many years. After his death I have kept that account as is. One issue is convenience, the utility and household bills are paid from it. It has come in handy. I don't want to be bothered with sending a death certificate to the electric company just to get the account in my name.
My lawyer said not to stress about it until I pay off the house. However, my initial plans were to move six months to a year after his death and due to my health issues, inertia, etc., I 'm still here.
I have not changed anything regarding the utility bills..I did get some of them to cooperate by putting my name on the bills too...All our accounts were joint and now they are under my SSN. Do I legally, for some reason need to change this when I have been paying the bills anyway for the past several years? What happens if we don't change it, are we breaking a law of some kind?
Some places can be a real pain if you are not listed on the account. I tried to get something taken care of over the phone, and they would not do anything without talking to DH. He was at that time unable to speak well. So the next time I needed to pay the bill I took it down to the office with our check with both names on it. And had the account put into my name. Most of the time you can put both names on any account. I made sure I was primary on the accounts that would let me do that. Or the only name if possible.
Which reminds me how I got annoyed at Chase. I didn't realize that some paperwork they sent us converted our joint credit card account into a single owner account and my wife is that owner. Making it harder for me to cancel that credit card. I always have POA. Now if only Verizon will stop charging that card for my phone bill.
paul, can't you call Verizon and give them a different card to charge? I got my husband a pay as you go phone (I think in my name) and gave them the credit card I wanted them to charge. Won't they take a change in credit card?
Yes, I got all legal work done early on. The one thing I didn't think of until later was, what if I died before him. (not likely) but you never know in life. As my 2 children are from a previous marriage and we have no children together, I would want our money to go to my kids. So then, I thought I would have to assign someone in his family (his sister) to be responsible for him even if he was in care. Then they would need some money to cover his incidentals and you never know what that might necessitate so I created a trust fund for his sister to manage his needs. So, I thought I had done all, until the thoughts start in the wee hours. Has anyone else thought of the 'what ifs'?
I went to a Medicaid specialist lawyer to get an expensive will made in case I died first. Half my assets go direct to our children and half into a trust for my husband that is carefully worded to not get in the way of his getting Medicaid. A local accountant who has long handled his aunt's affairs is the trustee. I did refuse to use another kind of trust to avoid probate; I didn't want to set things up that I would then have to dismantle in the likely situation that I survive him.
Yes I did that also, The trust I set up, does not come in effect until I die. It was cheaper to set up this way according to the lawyer I used. I also had our house put in my name only for the same reasons. I did not want anything financial 'frozen', and have to go to court because he is deemed 'incompetent'.
LFL, I have changed the credit card to charge around 5 times on the web and have called Verizon about the issue. They keep charging the credit card I want to drop. The last time it appeared that I might have made a mistake, so i have to wait a month for the next charge.
Another Canadian here in BC. My hubby was placed in October...his doctor took it out of my hands and he moved him....I could of objected but the doctor knew what was right. I had the guilt that I could do this longer.....NOT!!! now 6 months later I know it was the right move. My health has greatly improved.