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Joined: 1/14/2015
Posts: 40463
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Originally posted by: DianeK
I am returning to this forum after a long hiatus. Mom has slipped a lot this fall and my dad is not able to talk about or deal well with the issues that are coming up with Mom. There are four of us kids - we have been on the same page with Mom's care. But now, Dad seems intent on putting Mom away from him somehow, some way. He just can't do this he says. He has 5 hours of help five days a week. Do i let him move Mom into a nursing home? It will take support from us kids. this is not what my Mom, or us kids want. Mom is still able to eat, connect with us, dress herself and do many other things. Dad doesn't hear (literally), doesn't listen (so misses much of Mom's intent in a conversation, making her even more confused), doesn't seem to recognize how much of a sacrifice it is for us to come to their house to help (all of us have full time work, all of us live an hour or more away.)
I think this is a rant. I can't even figure out the question I have, but this was an awful, awful weekend. Dad so intent on the stupid Christmas schedule he and Mom enforced on us for years and years. Not really allowing us to help, angry with everything we did. I think it's my own anger i have to deal with. It feels like he wants to put Mom in a kennel - we can just drop her off for two weeks he says. As though that wouldn't be excruciatingly difficult and possibly lead to a faster decline in Mom. But he is her husband and it is his decision. If he moves her to a home, how do i keep a loving relationship with him when i feel so disugusted, especially if i have to help him do it??
dkk
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Originally posted by: sanjosepat
Hi DianeK
I had to place my partner of 30 years after 6-7 years of 24/7 caregiving.
Placement was the most difficult decision I ever had to make. We had promised each other we would care for the other if they ever became unable to care for themselves.
For six months before placement I had my partner in 8 hours of day care, 5 days a week. It was a big help but like JAB said I still had 16 hours a day without help 5 days a week and 24 hours without help 2 days a week.
My partner had an adult daughter who lived 2000 miles away so she couldn't be much help. When I was feeling so overwhelmed I called and asked her to come for a week so I could get some respite. I even offered to pay for her plane ticket but she was too busy with family to help.
Part of her reason for not helping was she talked with her Mom on the telephone weekly and for some reason Doris, my partner, was able to keep it together and speak loud and clear for a short phone call. After she got off the phone she would ask, "who was that talking to me".
As my partner became more dependent on me physically, I was getting older and didn't have the physical strength to continue caring for her.
I selected an Alzheimer's ALF, it was the hardest thing I ever had to do but at the time I didn't have any other choice. She did extremely well in placement. She participated in all activities, at home she was a loner, and did extremely well.
I visited everyday and it was like she didn't really miss being at home. She never asked to go home. And I continued the weekly calls with her daughter.
Her daughter and family came to visit after she had been in placement for 6 months. They were amazed at the amount of care she required and for daily extended visits she was unable to keep it together so for the first time they realized how she really functioned.
If your Dad has to place your MOM, he is not giving up, he just needs more help. The last thing any of us want to do is place our LO, to me it was like giving up.
You ask how you can keep a loving relationship with him if he places your Mom. Dont't blame him, he is accepting he needs more help. I think if and when you are able to understand and accept why placement is necessary, your loving relationship with your Dad will continue.
For me it has been over a year since I lost my partner but I continue to have a loving and wonderful relationship with Doris' daughter and grandchildren.
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Originally posted by: JAB
Hi, Diane. Lousy Christmas, huh.
Dear, I don't think there is any way for you to understand what this is like for your dad -- emotionally, mentally, physically. Are you aware that the caregiver often dies before the Alzheimer's patient, because of the stress? And it's even more stressful when the caregiver is the spouse. And, I suspect that it's extra stressful for a husband. Men simply don't have the experience needed to nurse someone who is sick, or to run the household. I imagine your poor dad is totally overwhelmed.
Yes, he has help for 5 hours five days a week ... that's great. He also does not have help for 19 hours 5 days a week, or for 24 hours for 2 days a week. That's not so great.
He's totally on his own 85% of the time.
I can't tell from your post whether you're talking about permanently placing your mom, or you're talking about a two-week respite. Respite is undoubtedly something that your dad needs, desperately. Why consider a nursing home to be a "kennel" rather than a hotel? Don't people go to hotels for a couple of weeks, to be waited on and pampered, as a treat?
It can also be a good way to evaluate the suitability of the nursing home for a longer stay.
A nursing home adds a team of specialists who can do all the "heavy lifting", while you, your siblings, and your Dad focus on providing the love. It doesn't mean that your Mom has been abandoned, it means that you are giving her the help she needs.
Many caregivers report (much to their amazement) that the loved one thrives in a good nursing home. They make new friends, they have all sorts of fun activities, they get lots of skilled care.
I would encourage you to help your dad look into the facilities that are available in your area. You may be surprised by how very kind and caring and compassionate the staff in a really good nursing home can be. There are tips and tools for locating and evaluating nursing homes (and other care facilities) at:
http://alzheimers.boomja.com/C...Patients-172601.html
I would also encourage your dad to talk with an elder law attorney who specializes in Medicaid issues. A good attorney can help your dad protect his share of their assets while also making it possible to access Government financial support programs. That way, you and your siblings will not have to help pay for the nursing home.
And, last but not least, I'd encourage you to post on the Caregiver forum, too, where you can hear from our members who found, much to their surprise, that a nursing home was the best thing they could do for their loved ones.
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Originally posted by: Dorinne
Diane Dear,
My Mom had Dementia, I had no idea what my Dear Dad was going through until my Husband got Dementia.
Yes, please read on.
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Originally posted by: DianeK
Thank you for your thoughtful responses. I am basing much of my concern on what the family went through with placing Grandma in a nursing home. My Mom has been terrified of that ever happening to herself. Maybe it will all work out well. Maybe what i think is protecting my Mom's wishes can be changed to something else. Dad words when he was thinking of the respite made me think of a kennel. I can think of it as a hotel but i saw how unsettled my Mom was with me this fall at a hotel. She is still quite aware and able to recognize her surroundings.
She has never admited to having alzheimers, just not sure why her memory is bad. She still hides her difficulties from us as much as possible.
I live nearby and go down to see them frequently and will now be going even more often. At least for several hours each weekend to get Mom dinner and into bed and probably one evening a week. I live about an hour away. You are right - i can't know how my Dad feels. He did say if he can get her in a nursing home than he can do whatever he wants to do. I will do my best to come to terms with my feelings and extend thoughtful, respectful care to my Dad as well.
And i am going to write here and read through the forums again. LOTS of good help in there!
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Originally posted by: Cathy J. M.
You're right that some nursing homes are awful -- and it sounds as if your grandmother had a bad experience in one. However, some facilities are very good, especially if the family visits often.
I can understand your being upset with your dad. He may just be so exhausted and stressed that he says things that he wouldn't say if he were rested and renewed.
It will be tough for you to present the respite experience to your mom in a positive way -- when you visit, for example -- since you have grave doubts about it. Still -- it will be much, much better for your mom if you can take the attitude that it's a good thing all around and it can be a sort of vacation for her -- a chance to make some new friends, try some group activities and enjoy the new place and being catered to. Maybe there's a garden? Pretty sure there will be some activities.
Help your dad find the best facility if posssible, and visit extra often. He may be too tired to visit as much as your mom would like.
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Originally posted by: DLMifm
What wonderful replies.
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Originally posted by: sanjosepat
[QUOTE]Originally posted by DianeK:
He did say if he can get her in a nursing home than he can do whatever he wants to do. QUOTE]
Have you asked him what he wants to do? Ask him, maybe you or one of your sibs could stay with your Mom for a few hours or a weekend so he can do something for himself.
For me doing what I wanted to do was getting an uninteruped nights sleep. My partner started wandering so I had to sleep with one eye open in case she got up.
It sounds like you want to help your Dad as much as possible. Any help you can give will help him provide better care to your Mom.
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Originally posted by: Dorinne
Oh, forgot to say than my Dad passed first.
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Originally posted by: DianeK
JUst realized I am not a spouse or a partner and should have used the other message board! I will keep reading. Thanks! Diane
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Originally posted by: sf
Diane, you really should probe to see what he would like to do. It sounds frivolous when put in words that way but may not be. If I had a week or so of respite I'd sleep every night and take a few naps, catch up on all the chores that never get done, spend some time alone (I'm never alone for more than a minute or two).
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Originally posted by: DianeK
It's so hard to get him to say what he wants to do. I'll keep trying. He's not an introspective person, I think he often doesn't realize what he wants or needs. It's also very hard to get him to step aside when I or one of my siblings are there to help. I think he just wants the serendipity of a day without care - don't we all, that's a blessed freedom. I'm going to watch a movie, or read a book or... I guess I do feel he is frivolous about feelings, or doesnt' understand - always has been.
He does sleep as much as he ever has - Mom doesn't wander and sleeps long hours at night. The care during the day allows him time to go for coffee and to play cards, so he does have some break at least which is good.
I appreciate all the great comments today. I feel more relaxed now and able to work through the issues with Dad in caring for Mom.
Guess I should say I am part of the family that can be causing some of the difficulties! But I do know my family are all good people trying to do our best.
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Originally posted by: Neoh
quote: Originally posted by DianeK:
Guess I should say I am part of the family that can be causing some of the difficulties! But I do know my family are all good people trying to do our best.
I have a suggestion for you, that might help your dad - and give you a better understanding of what he is going through.
If it would not be too much of a disruption for your mom, have her stay with you for a couple of weeks. That will give your dad a bit of respite - and you will get a better understanding of what it is like to care for your mom 24/7.
I am formally just at the beginning of this journey (even though I have suspected that is where my spouse was headed for a half dozen years). Although I would not have used the same words, I want the same thing your dad does - to be able to do what he wants to do for a while. For me that means to be able to think about changing jobs (my current one is stressful, but it provides the health insurance everyone in my family depends on, and the money to pay the bills), to come home from work to a house that is not more chaotic than I left it, to be able to say "yes" when the charity I volunteer my photographic skills to asks me to take a session, even just to be able to sit for a few minutes when I get home from work without having to undo whatever crisis this disease has created. Essentially, I work two jobs that take up all of my waking hours. One I get paid for, and the other dealing with the impact of this disease (and my daughter's debilitating disease, as well). It is exhausting in a way that you can't imagine if you are not living it.
JAB also mentioned the possibility that your mom might actually enjoy being pampered - I just visited my parents in their retirement community. They mentioned the fluidity they have there - that gives the residents the permission to try moving to the nursing home section of the community without committing to never going back home - and that permission to try it out leaves many of them really ready to make the move permanently (and my mother described it as pampering that made the difference, which is why JAB's comment sparked this thought).
If a week or two of respite care was arranged in a place (like) your mom might consider moving to, it might leave both you and your mom less apprehensive about what a permanent move might mean.
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Originally posted by: Starling
When I first read your post I wanted to scream. I walked away from the computer. Now I've read the answers you have gotten from others and I'm a lot calmer.
You've already been told that it is possible that what your father wants is to have a full night's sleep, because it is unlikely he has had that for months or years. It is also possible he would like to be able to go out to lunch with the guys once in a while, or go fishing, or just go to the grocery store alone. Or maybe take a walk to the mail box. It is very possible that he can't do any of those things.
You said that he has help 5 hours a day. That is good. It doesn't help with the other 19 hours in the day when he is alone with all of the issues.
My husband went to a nursing home in crisis mode. I didn't make the decision. A RN in a hospital Emergency ward made the decision. She decided it wasn't safe for me or for him for me to take him home. As he was physically attacking the one on one aide at the time she made the decision, she was probably right.
They take very good care of him in the nursing home. No, they don't do it exactly like I would do it. I decided that the person doing the job gets to decide how to do it when I was an office manager. If a mail clerk can make decisions then a CNA or LP or RN is allowed to make them too.
He is clean. He is safe. I am safe. He is dying surrounded by very kind and gentle people who care about him.
I've begun to put my life back together. I've actually done some of the things your father might like to do, like go to the doctor or do physical therapy. I've even been to a Christmas Party this month. People tell me they have not seen me for years. It is the truth. I haven't been out of the house for YEARS!
If your father thinks it is time for him to place his wife, please support him. He is the person doing the job of 24/7 care even if he has some help doing it. He gets to make the decisions on how to do it. If he thinks he needs more help that any in-home service can provide, he is probably right.
Someone else has warned you that he might die first. It happens a lot with this set of diseases.
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Originally posted by: JAB
quote: Originally posted by DianeK:
JUst realized I am not a spouse or a partner and should have used the other message board! I will keep reading. Thanks! Diane
All of our members are welcome to read and post on any of our forums. You're far from the first child of an AD loved one to post here. This is a good place to find out about caregiving from the spouse's perspective. 
I mentioned the Caregiver forum just because it's a lot bigger and more active, and you're likely to get even more responses.
How long ago was your grandmother in a nursing home? There have been huge changes in the general opinions on how to provide the best care in the past 10 years or so.
(I wouldn't assume that your dad is getting plenty of sleep just because your mom doesn't wander. My husband is in bed for many hours and he doesn't wander, but there are plenty of nights when I get little sleep -- I'm very much aware when he's having trouble sleeping, and wake up whenever he needs something, is having a dream, wants to use the bathroom, you name it. Not to mention, there are many nights when my mind simply won't stop whirling about my concerns over his health, things that need doing, worries about the future...)
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Originally posted by: Rkg
Diane, You have gotten some very good feedback to your questions, but I would love to say, I would give anything to have 5 hours a day of help. Oh my God, I would be in heaven! So to you and your siblings I say, Thank You! though your DD can't seem to appreciate your helpfulness your stepping up to help gives me hope, though we are much further along in this journey I still hold out hope that my DH family will step up and help out. I am not holding my breath, but to hear of children being so involved reminds me that there is still hope in this journey.
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Originally posted by: DLMifm
quote: Originally posted by DianeK:
It's so hard to get him to say what he wants to do. I'll keep trying. He's not an introspective person, I think he often doesn't realize what he wants or needs.
Your spot on. I am assuming he is senior citizen. He's undoubtedly reacting to the stress he is under. How many of us regardless of age can put into words the unconscious needs that we have. Perhaps a checking question conversation might help him. i.e. "You must want the best care for mom.....? Am I correct? See if you can formulate a series of wants and needs based on your knowledge of him. Present them to him to confirm. Looks as if you must do some of the thinking for him.
Knowing my LO has AD and AD is terminal I know inside I am extremely stressed. I have more senior memory moments that I'll admit to. I can't (i.e. I'm unable) discuss my own wants and needs with my family. It is much easier to address these things with outsiders.
[/QUOTE]
You previously posted:
quote: Originally posted by DianeK:
Dad doesn't hear (literally), doesn't listen (so misses much of Mom's intent in a conversation, making her even more confused)...[Quote]
I'm deaf in one ear. And I have 89year old sister who is quite deaf.
We get accused on not listening. If we can not hear the words how can we listen? Everyone involved get confused. My LO gets confused and confabulates conversation content which is garbled more when my sister catches parts of the conversation. As caregivers we have to learn to listen, sort of fictional thinking and somehow keep our own sanity. It becomes very stressful being a middleman in these conditions.
quote: Originally posted by DianeK:
...doesn't seem to recognize how much of a sacrifice it is for us t o come to their house to help (all of us have full time work, all of us live an hour or more away.)
I hate to admit it but they probably are emotionally incapable of recognizing a lot of things. I attend a couple of AD caregiver support groups and members discuss the lack of appreciation and how it upsets them. Can't fix it so guess we have to live with it.
On this forum we appreciate you !!
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Originally posted by: Rkg
Diane, I have to ask, what stage is your Dear Mom in? It doesn't seem like she's that far along. I am certainly not saying it's easy even in the beginning. Just wondering what stage shes in.
Don't be so hard on yourself, as I said in my first reply. It would be a blessing to have your and your siblings help. So don't beat yourself up for trying, at least you do.....
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Originally posted by: DianeK
I haven't had much time to read all of these wonderful posts! Thank you so much! I am at home with Mom now, so Dad can go away for a day to visit a relative.
I had a nice time yesterday with Mom - lunch, shopping at Target, a nice movie last night (with voice overs by me). Mom is up now and having breakfast.
I"ll have to check to see the stages, but Mom still can do many things, sometimes with help. Eats, uses the bathroom, puts dishes away, seems very connected much of the time, though knowing who I am goes in and out. Some days she is confused, but so far redirection is fairly easy makes her calm.
Dad and I will be going to a memory care unit today. I am trying to accomodate myself the liklihood that Mom will go there sooner, rather than later. I have written to my brothers and sister to start them thinking differently in this process too. And I'll go back and read what you all have written more carefully this afternoon.
I had hoped that Dad might use this message board but he is new to the internet and I'm not sure how well that will work. We will see.
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Originally posted by: Cyndi P
Hi Diane, I too am an adult child/caregiver. My Mom has FTD and was placed in a NH in March of this year. It became quite apparent in January that placement would need to happen sooner rather than later as my Dad was terminally ill with colon cancer. He resisted placement but after many sleepless nights, constant falls, and his own weakening health he realized there was no other choice.
And, thank God we placed her when we did because less than two months later my Dad died. We would have been up the proverbial creek with out a paddle if Mom was still at home.
I cried and cried at first, but I can tell you that over time, realizing that my Mom was getting the care that none of us could give her 24/7, it was like a huge weight was lifted off our shoulders. Because quite honestly, I didn't think I could have handled the stress of caring for both parents much longer without my own health being seriously affected.
When my Mom was still at home my husband and I were getting called 2-3 times in the middle of the night to come and get Mom off the floor and it wasn't unusual for my husband to go back once or twice during the day (he worked the closest to them) for the same.
Now when we go to the NH we can enjoy the time we have with her, reading books to her, doing word search puzzles or jigsaw puzzles, or just visiting with some of her new friends.
My Mom was never a very social person, she still isn't, but she does get involved in some of the activities at the NH and truly enjoys them. She gets her hair done every week (she wore a wig for 40+ years) and LOVES it! She's not always crazy about some of the food, but she was picky before, too. And there's always dessert  !
Just keep in mind that this is an extremely exhausting disease, both mentally and physically and realizing one's limits is not giving up, but an acknowledgement of only being able to do so much.
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Originally posted by: DianeK
Again, I must say thank you to you all! You can't possibly know all the ins and outs of my life or my parents life but your comments are so good even if they don't match my world exactly! Much has been said here that is extremely helpful.
My siblings, their spouses and Dad are in close and frequent contact. All of us try to pull together. We have a good support group in each other with good friends who help too. We'll keep working together.
Diane
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Originally posted by: DianeK
Commenting back to an earlier post - I have a full time job and hour away from Mom and Dad and can't really take a week or two away to stay there full time. I could plan a vacation to do just that sometime, but it is difficult to leave work right now.
I talked with the care assistant yesterday - they can do a lot more, stay 24 hours a day, come on the weekends, come for a week here and there, do more around the house. Dad and I also went to the NH and got some paperwork started to have Mom moved if he decides that is what he wants to do.
I have also suggested he talk to people other than me to help him make this decision. We will make sure he has more help and make changes very soon.
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Originally posted by: jfkoc
Well done!!!
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Originally posted by: Ellen Lee
You are all so helpful
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Originally posted by: Neoh
quote: Originally posted by DianeK:
Commenting back to an earlier post - I have a full time job and hour away from Mom and Dad and can't really take a week or two away to stay there full time. I could plan a vacation to do just that sometime, but it is difficult to leave work right now.
That was actually part of the point of my suggestion - not necessarily to actually have your mom live with you for a couple of weeks, but to at least nudge you in the direction of thinking what it might be like to be in your dad's shoes.
Regardless of the caregiver's personal circumstances, being a full time caregiver (even with a few hours of help a day) is an overwhelming thing - and at least your first post suggested you thought your dad just a wee bit selfish for wanting a break - or for doing it less than perfectly.
The fact that you can't really imagine doing it for even one or two weeks because of the disruption to your own life suggests your perspective might have changed a bit. That's a good thing - because as a spouse, I can tell you that your dad needs all the emotional and practical support you can give him to allow him to make the best decisions for him and your mom (and those decisions may not match what you think would be ideal, but he needs you to support them anyway)
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Originally posted by: howdy2u
We did not plan to place my mother until she was really late stage, but as luck would have it, I was the sole caregiver for almost 3 years with very little support coming from my siblings, holding down a full-time job from home in addition to caring for my mother. After having a number of discussions with sibs about the fact that I was getting almost no sleep and about to lose my job, the decision was made to place her much sooner.
I can say without a doubt it was the right decision - she has been able to participate in and enjoy the activities at the nursing home, she is on a more normal schedule (instead of having to live on my afternoon shift schedule), she is getting a balanced diet and is much better off than she was with me.
Placing her has also allowed me to become the "daughter" again instead of the boss/aide/cook/taxi driver. I spent all day and night working on the tasks required of a caregiver and couldn't spend any real time just talking with my mother or doing something with her.
Placing your mother will likely allow your father to be more emotionally supportive of her, since the major caregiving will be done by the facility.
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Originally posted by: time for two
While reading this discussion, I am reminded of my mother's comments when she was being placed in an Alzheimer unit. She wanted to know why her husband wouldn't take care of her anymore, they were married and that was what married people do. I explained, to her, very much aware that dad was listening, that he was taking care of her...by being sure that it was the very best care. I told her that he was so tired from doing the physical care that he was missing the quiet loving times they used to enjoy, playing cards etc. It seemed to help her and he has said many times it helped him. He had been feeling bad that he couldn't care for her at home any more. So, think of your dad and how they really should be able to enjoy the loving times together.
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Originally posted by: JAB
Carol, hi. It's been a long time since you last posted. Have you been lurking all this time?
I'm sorry your husband's journey has been such a rough one. Thank you for sharing your perspective on placement -- it's something we need to hear.
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Originally posted by: Carol63
Family is soo important in living with a LO with AD. My LO is 17 years older than I. He has 2 daughters who are similar in age, just a few years younger and over 1000 miles away, a younger brother (60) and our 3 teenage children. Our children and I have cared for him at home since his diagnosis at mild/moderate in 2007. We knew something was wrong, but never this.
This fall he reached all of the stage 6 and started stage 7 symptoms. I work full time 30 minutes away and the children attend hs 10 minutes. Oldest son was ususally home by 12 pm to keep an eye on Dad as we had learned over the summer to keep someone with him. This was a tremendous burden on them and on me as I cared for him otherwise.
His wandering, incontinence and a perceived medical emergency led us to the ER and placement in a NH/hospital. He was becoming aggressive and violent (threatening)towards the children but I have never really seen it. I know it exists because he has been returned to the hospital twice from NHs due to his behavior.
This decision has been good for me, and the children. I promised him I would never abandon him as we are the ones he depends on. But now the children and I depend on caregivers to care for his needs so we can visit him and care for him. He was never a puzzle doer, but an outdoor active man who will turn 65 in May. So arts and crafts are not his thing or playing Bingo (he tries to eat the markers)
I remember the relief I felt when he accidently threw the car keys away. I never replaced them and he never tried to drive my van. I later found out that he would take my then 12 yr.daughter out for a drive then they would become lost before getting back home. The lord was good to us and protected them from harm. Take the keys away, to have lost my daughter would have been more devastating.
The progression of AD has been difficult for all of us. It tears at the center of our family, but we will continue to love and miss him even though we do not have him in our home. We visit as best we can with 3 teenage schedules and my work schedule. Right now he is over 1 hour away and will probablly be moved to a NH over 4 hours away as it is the only one that will take him due to the behaviour issues.
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Originally posted by: DianeK
Good point storyteller's daughter. I will remember this when it comes time to move Mom. Now that I've come to terms with this possible decsion, Dad is saying mom should stay home with him.
I am just back from 11 days with them during which time i realize Dad needs to gain his own recognition about asking for and receiving help. It was difficult to be there.
Amazing to realize how many people in the world are dealing with this situation and all the stress that goes with it. And this is only one disease!! So may other people out there are in pain too.
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