Married for going on 9 years. Husband's stroke happened 2 wks before the wedding. He's left with dementia that he cannot recognise but I do. Some other people see it and others don't. He's being followed by Neurologists and every kind of ologists there are but it's getting worse. Due to a profound hearing loss and difficulty in comprehension it is less and less that we communicate. I do everything because he always gets things fouled up, breaks thing to where they cannot be repaired or procrastinates until whatever it is is a mute point anyway. I'm tired, frustrated, burned out and scared. He's not bad enough to be in a nursing home or to go to a day-care. It's that in between stage that is hell....probably for him too. I feel sad, guilty about being overwhelmed and crabby and just don't know how to cope. Have just joined a once a month caregiver group but everyone else's spouse is in a far later stage of dementia so nothing relates to me at this stage except that they have all said this is the hardest stage because he is functioning, aware and unable to be normal. I'm scared.
I remember feeling exactly the same way at this stage; it really is hard. Others will be along to provide help, I know. I'm sorry I can't be more helpful at this time, but I'm still recuperating from an infection. One thing you could do is check out old posts and maybe some links on the main page. Most of us have been through this "scared" stage. Also your own doctor can be of help - you are important, too, and need to be cared for.
I am in the same place as you are. My hubby is not advanced as many others even though it has been 16 years since we started to notice changes. I am scared as well. He is very mean o me and that is part of the disease. They alway hurt the one closest to them Just remember, it's not the man you fell for, it's the disease. Your right it must be terrible for them.they are losing everything. Do you have family that can help o give you a break? Have you looked into caregivers to come. Ask your Alzheimer's society if they have a drop- in program there.
Where do you live? Others here may live close and will be able to suggest help there. I live in Eastern Ontario, Canada.not likely must help.
There is a good book by Pauline Goss called Loving someone with Dementia. It really helped me
Boopie (love that name), you are in a difficult stage with him right now. I used to always say that it would get easier when my DH deteriorated to where he couldn't get involved with everything and mess things up, and in a left-handed, sad way, it turned out to be true. One thing I would really try to do at this point, if you have not already, is make sure that you have the ability to control the finances.I don't know how you have things set up, but there are a lot of posts about this. You are going to end up making all the decisions--your home, your car(s), health care decisions--so you need the will, durable power of attorney, health care proxy...all that stuff. If he still has the ability to mess up your finances, you need to get his name off the accounts, or at least get the money out of those accounts and into new accounts that are in your name only. This is very important.
Yes, it is scary, but just come to this website where people understand and can help you through it.
Boopie yes many of us have been there and understand just all kinds of emotions hitting you from all sides. Tough tough time. As Mary75 has said a wealth of information in the old posts and don't be afraid to let your feelings out here everyone understands.
You say he is not at the stage for day care or placement but the fact that you mention them you are at the stage where to you need to start looking into them to be prepared for when or if the time comes. Also remember it is not when he is ready it is when you are ready?
Hi Boopie. My DH is in a similar stage. I found lots of interesting coping ideas by searching these.discussions. It is really easy to search. Go to the top of any of these pages.and click on the Search tab. I am in Southern California. My local Office On Aging has a Care Pathways program. I kept thinking it was too early for me to attend, but it was just the right time. It is a 12 week course for Caregivers. The first hour was a class and the second hour was a support group. Both were.valuable. For me the most valuable was the book they gave us and list of local resources care and lots of handouts. One class was a presentation by a local lawyer with an offer of a free consultation. Priceless info. They even provide caregivers if you need someone to stay with your DH while you attend the class and will even pick you up if you need a ride. You dont even have to be poor to participate! I highly recommend calling your local office. I was afraid to call and when I finally did, I was amazed at how the woman made me feel welcome in the first 5 seconds of the phome call. I hope you get someone like that!
bhv, That sounds like an excellent program. One of my biggest criticisms of our society's lack of attention to our predicament is that we are on our own in managing our spouses' care and that the benefits (if any) that are available to help us are hodgepodge and idiosyncratic.
Boopie, Are you with your husband 24/7? If so, you probably both need some space. Is there any chance you could get someone to come in and serve as a companion for your husband?
Why do you say it is too soon for day care? I thought that too but got it approved for when he was ready. Well, he was ready. He is a social person and having that contact is good for him. Plus, they say 60% of those there have dementia so he can go and not have to pretend to be 'normal'. At first he was not happy but now the days he doesn't go he ask when the bus is coming. He was first approved through Aging and Long Term Care, then I applied through the VA where they now took over paying for it.
So, even if he is not 'ready' do the paperwork now for when he is.
Yes, call it a "Seniors' Group" or some such thing. And if he can help the group by being a "volunteer" and not really a member, that can make things go more smoothly, too. Or just make sure the staff knows that he can help out to some extent, and would probably be more comfortable there if he could contribute in some way. It can be a touchy situation that calls for a lot of courtesy and tact. Sometimes the more functional members really are of great help to the staff and to the less functional members. So much depends on the population mix and on the staff. In my years as a public health nurse, I was in the adult day cares a million times--seeing patients, touching base with the staff about something...whatever. I often thought that for a senior with health problems stuck home alone all day, these programs were a godsend. We avoided the term "daycare." Our phrase was, "Adult Day Health." (As in, "Mr. Smith, let's see. Now, you are still going up to the Adult Day Health three days a week?" Something like that.
Just brought back a memory for me. When I was trying to get Lisa into s day program once s week I billed it that she could help out. Actually everyone was much older but Lisa was the one that needed the help she could not do many of the things, puzzles, games etc the others did. So sad.
However Boopie all good suggestions and good luck daycare, however you get him there, gives you a chance for some you time. Nothing wrong with fiblets.
Rona, I remember that so well. Once placed he said...everybody else here is so old, I don't belong here. My heart broke as I looked around at everyone else (in their 70's and 80's) and realized he was right. BUT, they were all conversing with one another and enjoying the fellowship of the meal that they were able to feed to themselves as we sat in the corner of the room where the 'feeders' were segregated. Yep, they were much older (he was only 60) but I was there every day to feed my guy. He just couldn't understand that in spite of his age, he has lost the most basic abilities to do things for himself.
Thanks Aunt B, yes Lisa is 60 now and eating can be a bit of a mess but we are not at the feeding table yet. Physically she is doing well really makes be wonder sometimes. After being here for awhile and listening to everyone's journey you realize how different it can be for everyone. Lindylou the physical decline for you partner seems to have picked up speed for us the cognitive slide just keeps going but physically all ok. Listening to some they say doing fine then one day cannot walk, or cannot swallow, will it be a drastic switch or just s slow steady decline?
My husband was on a long, slow downward spiral that seemed like it was going to last forever. But there were three very marked, sudden, dramatic changes where he deteriorated very suddenly mentally and physically. I would say: Just be ready for anything.
Dan seemed to be in a slow steady decline, but then after his urinary problems the decline came quickly. He's beginning to have trouble with eating, doesn't remember to wipe his nose when it runs, didn't seem to care when his daughter went to visit him (she was the one he always called by name & just lit up). Plus the physical weakness & loss of leg strength. Now I know what everyone meant when it was said things can change over night.
I haven't been on in a while with everything going on here lately. Not only did I pass the year mark for my husband in assisted living but have been dealing with both of my parents who have dementia (86 & 84) trying to get them some much needed help. I feel like I'm in the twilight zone because my mother, like my husband, is an insulin dependent diabetic so I'm back to taking blood sugars and preparing shots. Feeling guilty already that I hadn't seen much of my husband due to dealing with my parents, I finally visit him yesterday. After my visit, I run into one of the owners who is also a nurse and we are talking about my husband and how he's doing and that he is declining. She asks me if I've started thinking about Hospice...WHAT???? I was taken aback and asked her to be direct with me and tell me what's going on. I know he doesn't speak and really doesn't seem to know what's going on. He still seems to know me and the kids when they went at Christmas. I know he's been in diapers for a while now but physically he can still walk on his own. He needs help bathing. I don't know, it's only been a year and a month and a half since I placed him. I'm in a fog about it. I will talk with the doctors about it more but I just couldn't ask her anything else. She was gentle in her approach but I still was caught off guard and am still in shock. I guess from what I read here, things can change pretty quickly and when you least expect it.
Being on Hospice can get him a lot of help, without necessarily meaning there is a six-month prognosis. Keep us updated on why they started that discussion...maybe they are just doing some longer-term planning. DH's doctor and I were planning on Hospice eventually, but it was another 15 or 16 months before he actually went on it.
Hi Sass. What an heavy burden of responsibilities you have. Based on the Hospice at my husband's facility, I don't think that being accepted for it is a seat-of-the pants decision-making process based on whether someone is "failing." The Hospice here has specific guidelines. My husband was accepted because he had stopped walking, stopped eating solid food, had had lost 10 lbs. in one month, and lab tests had ruled out causes other than advanced dementia.
bhv, elizabeth and myrtle, I appreciate your support and suggestions. I need to schedule time to talk to the doctor so I can thoroughly understand the plan and thought process. I have been reading up on it to get more educated. One thing we did talk about was his room at the facility. It often smells of urine and I was all set to lay into her about that and she started discussing that topic with me stating that they are cleaning his carpet 3-4 times a week due to accidents he has. It happens in the morning before they go in there and/or possibly during the night if he gets up. He doesn't "know" that he's not in the bathroom and just urinates wherever. Once they go in and throughout the day they can and do help him. So once I heard that I didn't raise a stink about it. I have personally encountered hygiene issues with him when using the bathroom and he didn't realize he hadn't washed his hands after a bowel movement and had fecal matter on his hands. Me and the aide tried to get him to wash his hands to no avail. He wasn't comprehending that. It makes me sad and depressed. This from a man that showered 3 times a day. He used to shower before cutting the grass for god's sakes until I pitched a fit and said that was a monumental waste of water! Now, I can't get him to wash his hands.
Between my husband and my parents, I'm feeling overwhelmed emotionally and a bit depressed. I am also struggling with my son over his grades and stressing about him graduating high school. I am here parenting alone and desperately wish his father was not how he is. I probably would not have this problem with my son had his father not gotten sick. I know my son is having a hard time but fights me every step of the way when I try to get him help. At times, I feel I'm failing him as a parent and he is definitely getting the short end of the stick. I must persevere on this though. He is my son, my baby, and he needs me to be there for him and be his parent. Well, tomorrow is another day. I will be off to my Mother's first thing in the morning to test her blood sugar and give her her 2 shots, then off to the doctor by 9:00 am for my own appointment, then off to work!
Sass, I've been thinking about your really overwhelming situation. Emotionally speaking, it is just a perfect storm. Your parents, your husband, your son. It looks like your husband is in a safe place, but I'm wondering if your parents could receive some services at home, or at least, if they already have services...do they need to be increased? I'm wondering if you've talked to your local Office for the Aging (or whatever it's called where you live) to see what might be available for them, or to do some planning for their future. Or maybe other family members could be more involved with your parents, to give you more time for yourself, your home, your job, etc. I'm wondering whether your job is a good thing or a bad thing in terms of giving you a mental break from all that is going on with your family. Do co-workers "get it", are they supportive, etc. Are there things you could do to lighten the load in terms of paying someone to clean your house, mow the yard, etc. I'm wondering if you should talk to the school about the situation with your son...or if that would only make things worse. Kids are impossible at that age anyway...and it's a healthy, necessary thing that they are giving us a hard time and trying to break away and be independent...do their own thing...but it breaks our hearts, too. Maybe others will be along with some practical suggestions. I do think, as we've discussed a lot on this forum, that doing small, nurturing things for yourself can be more helpful than you would think. Buy yourself better coffee, listen to your favorite music in the car, pay for a better cable package or box sets of TV series, and just crash in front of the TV for some escapism. Things like that...whatever it is that relaxes you and gives you a mini-break.
Sass, You said your husband is in assisted living and his room has a carpet so I'm guessing this is not a nursing home. I'm questioning whether he is at the appropriate level of care (and I'm not talking about Hospice). I don't have the education or experience to answer this question but I do know that urinating on the floor is not uncommon in men with dementia. (My husband is in an all-male dementia unit and the staff is able to deal with this, since the floors are vinyl.) So I wonder why your husband is in a room with a carpet.
Sass - on the home page there is a link for an online group for teenagers. Maybe your son will look into that for support from other teenagers and kids dealing with a parent who has dementia.
there are things to spray on the carpet to neutralize the smell. Pet products have an enzyme that neutralizes the smell, vinegar can work (better smell to me), even baking soda rubbed into the carpet might help.
I would definitely look into home health care for your parents. If your dad or mom are a veteran don't overlook them for help. I think Medicare will pay for home health care - others here will know better since I have not used my husband's Medicare since his medical is through the VA. Also, talk to their doctor about any in-home help they might know about. Sounds like a nurse coming in every morning to check her blood sugar and get them started on the day would be a great help.
A friend of mine's husband lost the ability to recognize many things. One time visiting her father and step-mother her husband peed in a potted plant. Everyone took it well but it was a new sign of his losses.
I understand the kid thing. My son is a sophomore in college but had to deal with his mother's dementia in middle and high school. He could be very difficult to deal with. He missed most of the free therapy appointments in school but started therapy the summer before high school. A math tutor said that he was her most difficult student every. He was smart but wouldn't take any direction. The best thing I ever did for him was to move my wife into an ALF before Junior year. Yup, caring for her took a lot of time and energy I should have been spending with him.
With getting hit on all sides, is there a way to let others do more for your parents and husband?
As to hospice. This provides additional resources in caring for your husband. You should not wait until he is on death's doorstep. Almost every who has had hospice say they wish they did it earlier. At worst hospice can turn him down. It is also a time when his medical care is centered on comfort and not life extension. Talk with his doctor.
Sass- I do not post too often anymore but do check in to see what is going on. When I read your post, my heart went out to you. My goodness, you are carrying nearly impossible burdens. My husband too was urinating all over,the place and it started years before he actually passed. I found that once I moved him from the ALF to a nursing home, the nursing home was ill.prepared to handle this. After being there only 2 weeks I was informed they wanted me to move him to a "behavioral" unit. I was shocked. They tried toileting him every 2 hours but it did not help. One time he walked into another room and urinated on the bed. It was at this point that I went full steam ahead to try to get him onto hospice. Some people told me he will not qualify but I had a wonderful nurse who listened and she jumped hoops and got him on it. His care greatly improved after this. I implore you to get some outside help before you collapse under the weight of this. Hospice has different companies and I know because I worked with 2 different ones and they are different. If one says no check with another. God bless and I amazing praying for you.