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Topic Is there a point where you just cant! Go to previous topic Go to next topic Go to higher level

By Maddie52 On 2016.09.21 19:42

By flowers12 On 2016.09.21 22:49
Oh my goodness. 23 years is a lifetime. I sometimes feel the same way and it's only been 8 years and only the last 2 really bad years. I tell myself I can't do this anymore at least 4 times a week and cry often. This darn disease kills the spirit for sure. I was going to post a similar vent several times this week but my hubby was not wanting me to be out of his sight. I haven't got any help yet because I keep thinking I can do it even though I know I'm just kidding myself. Patience and compassion is what I pray for constantly. Thank goodness there are a few good times each day or I think I would go crazy. Venting helps a little so vent all you need to. We're all in this together and understand. BIG HUGS

By ljharper62 On 2016.09.22 12:58
I feel this way more than I want to admit. We are 5 years in and this is the first "bad" year. As much as I love him, there are days that I just want to run. I still work outside the home so he has to fend for himself during the day as we can't afford to get help. I'm not sure if there is any answer to this.

By lurkingforacure On 2016.09.22 14:49
We are in our tenth year, with kids and I work, so yes, I feel totally overwhelmed all the time too. I think I could handle things better if my husband were nicer towards our kids (he doesn't seem to understand the problems in this department), or even if he tried to help out a little, with anything, around the house...but he doesn't and won't. I know the day will come when he really cannot help, but right now he is mobile and he can, just won't.

My .02?

When I am at that wall, I leave if possible. Sometimes I can physically leave, and usually will go outside (it's hot but you'll put up with a lot to get a break!), but usually I can only mentally leave. I'll put headphones on and listen to music while I make dinner, fold and put away laundry, vacuum, whatever.

By Maddie52 On 2016.09.22 21:08
Thank you for responding. Flowers, my husband was diagnosed at 46 that's why it has been so long. He now has almost no mobility, incontinent most of the time and has much cognitive difficulty. Most of the time I don't know what he is talking about. It is comforting to know that others have the same feelings as I do. Its just that everything seems so dismal that even that comfort isn't enough. It seems that now I cant pick myself up and focus on the positives and go on. I don't see anything positive in the future. I always thought I would be strong enough but I am not. Thank you all again. Madeleine

By carman96 On 2016.09.24 09:27
Madeleine, I could have written your post. Sometimes I think I can't do this anymore, or I'm so tired I wonder if I'll just drop dead some days.
I do have some help but it's the long lonely nights that are the worst.
My husband is about 12 years into it. He's 70 and I'll be 65 in a couple months.
This is not how I thought we'd spend our retirement years.
My husband can still walk but needs assistance. He falls a lot. His dementia is pretty bad and his delusions drive me crazy. I can't leave him alone at all.
Is there any way you can get respite for a few days? Next week I am taking my husband to respite at the VA for a week. I am looking forward to trying to get some rest and recharge. We all need some time to ourselves.
I love my husband and I want to keep him at home as long as possible. I realize there will probably come a time when I will have to put him in a facility.
I give you lots of credit for hanging in there. 23 years is a long time.
You are really at the breaking point. I hope you get a chance to take a little breather.

By flowers12 On 2016.10.03 23:53
Do you ever just............. I don't have any joy in my life or see any in the future. I was encouraged to sign up for a class on dementia. It's once a week, two hours, for 4 sessions, all you need to know about dementia. Do I really want to know? How bad it will get? How to deal with it? How do you cope? How do you find the strength? I probably won't be able to attend anyway. My hubby will "need" me to be with him.

By lurkingforacure On 2016.10.04 11:23
Flowers, a big, huge, supporting hug to you. This is so hard, and we all understand.

If it makes you feel better, I'm not sure I would want to go to a dementia seminar/talk series either. I research as much as I can about PD itself, but to me, dementia is almost a no-man's land. No one's journey into that territory will be the same or even very similar, and given that there is nothing you can do to help dementia, why burden yourself more than you already are by hearing about how bad it might get? Your husband may never get to the point someone else did, so why worry about that happening?

This is the same reason I would never get tested for genes linked to cancer, PD, Alz, or any other disease we have no cure for and honestly, no real treatments for. I have enough on my plate without worrying about whether some ancestor's cancer is going to show up in my body, or when. I only hope if it does, it takes me out with lightning speed for my kids' sakes.

Hang in there, we're all here for you:)

By Maddie52 On 2016.10.04 12:46
Hi Flowers,

I so agree about not attending a dementia seminar. Don't do that to yourself. I wonder if/when my husband's dementia is going to get worse but no seminar or Doctor for that matter is going to answer that question. Sometimes I just ignore things--like last night when he was continuing to talk to our dog who was out for a ride with our caregiver. I don't even say the dog isn't there or anything--I just tried to ignore it and continue to watch the football game.
I understand how draining your life has become. My husband has to be fed 95% of the time. By the time I'm finished standing there feeding him his dinner I never bother to eat dinner. I'd like to just sit down and have a normal meal with normal conversation but..not gonna happen.
My mother was my father's caregiver for the last 7 years of his life and I feel that I am reliving her life. She did have 10 years after he passed but that was from her late 70s to late 80s. When you say you feel that you have no bright future I can relate--I'm only 63 and if I didn't have some very good women friends I'm not sure I'd ever laugh or have real fun. The planning it takes to go away for a day or two or anything is overwhelming.
You are not alone in this-we are all here with you. Please whatever it takes please try to find a little time for you and some joy for you!!!!

By Daisy123 On 2016.10.05 08:52
Sometimes I feel caught in a type of time warp, unable to go back, unable to go forward. Every waking moment is dictated by this ugly disease.

We are 11 years into this, with so much cognitive decline and DH is only in his mid 50's.

So yes, I feel cheated, for him and for me. We should be enjoying the best time of our lives and it has been taken away from us and we don't even have a store of years of shared memories to treasure. We will never get the chance to grow old together as so much of the man I once knew is gone from me already.

If it were me however, I would attend the dementia seminar. Better the devil you know and all that. It may not make you feel any worse and it may help you to connect with others who are going through the same experiences and anything that can help in any way, however small is surely a good idea.
Anyway you can always quit if it's too depressing.

I also signed up to one recently but was unable to attend for the same reason, but I would've liked to.

All the best.

By flowers12 On 2016.10.05 14:34
I was going to attend, see if I could deal with it and if too depressing not go anymore. But, my hubby had a bad morning and I couldn't go. This is my life, isolated and unable to get away. I finally decided that I had to get some help so I could escape for a few hours once in a while . I called an agency and discussed cost and how they screen their people and what the minimum hours were. Approximately $25 an hour, two hour minimum. Now I have to try and see how to pay for it long term. The VA says our monthly income is over the maximum for benefits. It's scary when you think about years of paying for help and how savings will dwindle down. I guess I'm thankful we have any savings.

Things will not get any better and the dementia will become more often. He doesn't let me out of his sight for very long and always needs me for something. I just don't know how he would react if I had someone in to help him while I went out. I'm afraid he would have a dementia episode. I love him and don't want him to suffer from me getting out for a little while. It's a sad, sad life for both of us.

By DBKinNC On 2016.10.20 19:42
Maddie52. I could have written your post. I so feel for you. I find I have little patience and am frustrated a lot of the time. I have little patience anymore. I am exhausted. I resent the isolation. My husband has dementia also, and cannot do anything for himself anymore. He is incontinent and has so many problems. We don't have the savings to pay for the hourly help it will cost for constant care.

We have had Hospice now since April, however, they are only here to bath and dress my husband 5-7 days a week. We have an RN who stops by once a week and a volunteer thru Hospice who is here for 4 hours per week. The rest of the time I do load so laundry each day, and 100% of everything else for him and for our life. I also work, so I do have to pay for help to stay with him because he can no longer be left alone.

That is my life - no social life or time for friends or even grandchildren. Its not fun to be at our house, so I understand why people and family don't stop by - I wouldn't either if I didn't have to be here.

You are right - things will only get worse. From what the Hospice nurse tells me, in the not too distant future my husband will be bed bound all day. Now he is there a lot of the time, but can sit on the sofa behind a tray that keeps him from falling, but not when I am out of sight.

We had a reprieve for a couple of years when he had stem cell treatments, but those days are gone now. The only lasting improvement from the stem cell treatments is his vision, which is good most of the time.

Wish I could give you a huge HUG, Maddie52.

By LOHENGR1N On 2016.10.20 23:53
Hi Donna, Sorry to hear Joe is doing so badly! I guess the Mexico thing didn't go so well and I'm truly sorry but glad to see a post from you my Dear Friend. I've often wondered how you both were doing over the past couple of years. Keep in touch Sincerely Al.

By DBKinNC On 2016.10.21 17:06
LOHENGR1N you are the kindest of people. I have missed your insight and wisdom. Yes, Mexico did have a great affect for many months, but then began to diminish. We actually had a 2nd Mexico stem cell treatment, and then one in South Carolina with a research group there. That one had absolutely no affect at all.

I am just resigned that this disease is so much stronger and more powerful than anything. I have basically given up and am just riding the daily events as they come. I care for you so much, LOHENGR1N, my Dear Friend. BIG HUGS to you!! How are you doing?

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