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Originally posted by: juneann
Ok I have just found this site and believe I know how you feel about being lonly. He sits right next to me in our chairs and he wants a kiss very other minute. I want to screaml. I love him so much but I can't kiss him every othr minute cause he doesn't remember I just kissed him. We traveled these US for 20 years in our RV on vacations. He is 81 and I'm 77. He has had Adz for 6 years now and he can't do nothing except feed himself most of the time. I have to dress him, take his to the toilet, put him to bed, put him in the car and out of the car, keep telling him to eat his food, hold his hand to walk, help him out of the chair and help him sit down. I have only left him 3 times for a couple hours at a time in these 6 years. I take him everyplace. I go Meijer to shop cause they have a wheelchair I can push him in while we shop for groceries. I do get so lonely. He can't do a conversation but he wants my full attention all the time. I feel like screaming all the time the last 6 months. He spits on the floor and furniture a lot and that drives me crazy. I like things clean and spitting to me is dirty. I know he can't help it and doesn't know better but in my right mind it drives me up the wall. He wants all my attention all the time. If I leave him in the chair and go out of the room he yells where are you. He is so lost. I feel so sorry for him. We have been married for 59 years and I know no life expect with him. How will I go on now and later. I have to find a way to deal with these last years. I will not place him unless Ican't handle it. Maybe I can find help. I can't think about anything except for now. I try to take one day at a time.
I wish I had an answer for you but I don't hve one for myself. I keep thinking God will help me but at times I don't think he hears me. I have 3 sons with families but they are busy. They think they understand but they don't really know how things are. He is different when somebody is here he doesn't want all my attention. He doesn't talk to family. We only have one son with his family that comes once a week. One son is so busy starting a business but if i need help he is here. Another son hasn't come to see us in 6 years. That is another hurt on top of my husband's AD.All I can say is hang in there but it doesn't get better.
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Originally posted by: JAB
quote: I go Meijer to shop cause they have a wheelchair I can push him in while we shop for groceries.
Hi, Juneann, welcome to the forum.
There is a lot of equipment out there that can make our lives easier. Try browsing through some of the online companies that sell supplies and equipment for physically and mentally challenged people:
http://alzheimers.boomja.com/A...nd-Supplies-385.html
SpinLife, in particular, has a huge array of walkers and transport chairs, with tons of information about them. (Once you know which product you want to buy, shop around -- the prices can be all over the scoreboard.) I bought a lightweight transport chair that I can easily heft into the trunk of the car, and so it's always with us wherever we go if my husband isn't able to walk.
A raised toilet seat and toilet safety rails can make it much easier for him to get on and off the toilet. Or maybe a bedside commode, so you don't have to walk him all the way to the bathroom in the middle of the night would make your life more livable. The list is endless.
If you can't afford very much, Medicare will pay for most durable medical equipment if you get a prescription from the doctor. And there are many places to look for used equipment, at little to no cost to you:
http://alzheimers.infopop.cc/e...784059087#9784059087
There's also "adaptive clothing" that can make it much easier to get him dressed and undressed:
http://alzheimers.boomja.com/C...7s-Patients-384.html
As for getting help, gosh, yes, you need to -- you can't do this all by yourself. Talk with your local chapter of the Alz Assoc:
http://www.alz.org/apps/findus.asp
and your Area Agency on Aging:
http://www.aoa.gov/AoARoot/AoA...s/find_agencies.aspx
to find out what support programs and services are available where you live.
There may be a number of financial assistance programs you could tap into, to help pay for your husband's care. There are some tools and helpful articles on how to find the programs for which you are eligible at:
http://alzheimers.boomja.com/F...ssistance-27304.html
If you or he ever served in the armed forces, don't overlook veteran's programs such as Aid & Attendance:
http://alzheimers.boomja.com/V...-Programs-49965.html
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Originally posted by: k mason
Thank God we have this website. I just received a post card from my wife's friend who is on holiday in Europe detailing all the places they have been & the fun they're having, I think to myself "good for you" enjoy your vacation, enjoy your life & yet I feel a little bitter that those good times are behind me. Whilst friends & family have a certain sympathy for my situation they don't really appreciate the lonliness we ALL feel. I'm 52 & my wife is in a NH & I'm tired of my life, feeling sorry for myself & yet I can't snap out of it, moan over, until the next one.
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Originally posted by: Cheryle Gardiner
Oh, kmam, I'm sorry! You're so young to be going through this. I hope you're able to get away sometimes, although I know it's not the same as having your wife with you.
Jim and I have been retired long enough that we were able to do some traveling before his strokes, but we had plans to do more. It's really true that we shouldn't wait till we're old to do the things we want to do.
I hope today is good for you.
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Originally posted by: Mimi S.
Hello, Juneann,
Welcome to our world. We're so glad you found us. This is a great place for support.
And you do need support. You do need help in finding caregivers who can come and give you some relief. Do call the Aging office and your local Alz. chapter using the numbers JAB gave.
You do need to take care of yourself, first.
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Originally posted by: genevieveln
Hi everyone, it has been a long time since I chimed in. I started this thread, and hadn't seen the continued response it is getting. I guess we can all relate.
I saw someone brought up when everyone else has plans and you don't and that's what I'm facing now. I live in SoCal and the bulk of my family lives in the SF Bay area and I wanted to head up there for the holiday weekend, to get away and get some support. Talked to my mom to see if we could stay with her to allay cost of a hotel, she sounded happy about it and then told me yesterday that it wouldn't work...I think she can't handle my husband. So, we will stay home for the holiday and I think of all the folks heading out of town, or planning a party, etc. and I start feeling sorry for myself.
I also bring it up because for me, I see many people, even family not wanting to deal with the reality of our lives. This is so painful, because we need our loved one's support more than ever. I have been deeply hurt by my mom and find it rather amazing the lack of support from family and many friends.
So much has fallen on my shoulders. We are blessed to be able to have caregivers come for a few hours on a daily basis, for which I thank God every day. It allows me to get out and do things for myself. I went to an exercise class tonight and got to "forget" for a couple hours and it helped tremendously; but when I come back home, and see how old my handsome husband looks, with a look of bewilderment and his nose running, (constantly), I go back down the tubes.
And that feeling of being alone with the weight of the world on my shoulders returns. I guess like everyone has said, we will keep handling it, doing the best we can and fill in with friends (who have been better than most family members), and developing that "separate life" we need to have.
I wish everyone a good holiday weekend and I am going to make up a list of things we can do to give the next few days a more festive air. Like we all say, just gotta take it one day at a time.
blessings to all.
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Originally posted by: lurk
Hi, Juneann,
May I suggest that you see if your sons would read some of the forums. I think we really see the light when we read these true life experiences. I hope they care enough that they would do that just for more understanding. Hope you can make things better.
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Originally posted by: Cathy J. M.
quote: Originally posted by juneann:
He is different when somebody is here he doesn't want all my attention.
This is a big clue as to what to do next: hire some helpers to stay with your husband while you rest and refresh yourself. This will give you a chance to make some friends again, go to church if you want, go exercise, or just sit somewhere to relax.
Call your state's agency for aging to find out how to get some helpers coming in. It will make a huge difference in your feelings and energy, and will help your husband too.
I'm so glad you found us -- let us support you in getting help so you can be happy again.
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Originally posted by: SherylS
quote: with a look of bewilderment and his nose running, (constantly),
Have you had that checked? That was a question the Dr. asked me at a recent visit we had for my DH when we were trying to figure out a shortness of breath problem he was having. Finally decided it was allergies.
I guess running nose would have gone along with asthma?
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Originally posted by: SherylS
quote: Originally posted by genevieveln: Thanks for the Aricept side effect comment; we are at doctor  s constantly and no one has ever been concerned, including his neurologist; My husband is a retired pharmacist and he said it's from his bi-polar med, Lithium. He went off it for a while and tried another drug and the running stopped....but interesting that you say it's from Aricept.
I'd also read that shortness of breath is a possible side affect of Aricept so we've recently changed him away from that.
Hubby was on Lithium in the beginning, for his bipolar. The once a month blood tests were a drag, but more than that, at the time we were much younger and the impotence that came along with Lithium was not appreciated. After trying several different meds for the bipolar, depending on what was going on in his world at the time, for the past 15 yr we find the generic depakote works well and doesn't seem to conflict with his Namenda.
None of the other bipolar meds had that same Lithium related side affect. Now comes Alz meds and here we go again. But he's now 3-5yr old emotionally so thinks that 'sex stuff' is nasty.....at least I can sleep at night when I get the chance....(I guess that's bad news/good news, right?)
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Originally posted by: genevieveln
Thanks for the Aricept side effect comment; we are at doctor s constantly and no one has ever been concerned, including his neurologist; My husband is a retired pharmacist and he said it's from his bi-polar med, Lithium. He went off it for a while and tried another drug and the running stopped....but interesting that you say it's from Aricept.
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Originally posted by: juneann
To JAB thanks for answering and all your info. I did get a walker but he can't seem to handle it yet he can walk behind a dinning room chair that has wheels. I do have a transport chair and I can lift it in and out of the trunk of the car. I have contacted the CICOA and they have a waiting list but I'm on it. I have been to VA but our income is too high for them to help. I have been to a elder lawyer and I might do something there.
Our sons do understand and they want to help but they all have jobs and kids. They help with the yard and fix things when they break. I had a disable shower and a raised toilet installed last Feb. That was a blessing cause it is right off our bedroom and he can get in the shower where he couldn't step into the tub. I think I have been everywhere i can think of. His clothes aren't that hard to put on and off. I have a list of home care i can call when I think I can't handle it another minute. I will have to pay for all that help. Getting away would be great. I have a hard time not feeling guitly about having somebody sit with him. He is so attached to me I don't think he could stay with anybody. Since I wrote this one son has taken him for a ride for a couple hours couple times and the other son has taken us to the mall and he pushed his dad while i shopped. These things have helped so we might continue this way. Any little thing has helped.
Thank you for all the sites I can go to.
When he lets me sleep at night I can handle things much better. For the last week he has slept better since the doctor increased the serouqel.
I will hang in there longer. I know I can as long as I check in here now and then.
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Originally posted by: DLMifm
quote: Originally posted by SherylS: quote: with a look of bewilderment and his nose running, (constantly),
I guess running nose would have gone along with asthma?
Running nose is a side-effect of Aricept
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Originally posted by: SherylS
Have you checked Craigs List?
I did get my hubby a "security pole" at a garage sale. Their Dad had since passed and it wasn't very old, but it still cost $100. Look those up on the internet. My hubby is 6'4" and still 200#. He can help himself get out of bed with that where I'd never be able to lift him. It's worth every dollar I paid for it! I have it next to the bed but if I find another one I'm putting it next to his chair or next to the toilet.
As it is, I'm already going to a chiropractor.
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Originally posted by: Moppy
My husband has always been driven by goals and power and achieved it all. There were people thru the years he was devoted to and I never understood why. He travelled in business but there were no family vacations. His personality was strong, direct and sometimes harsh but always fair.
I was lonely many years, long before his Dementia diagnosis in April 2011. Lonely from the beginning probably. There was no solution to my lonely, melencholy life so long ago I built another life, one that he recognized only when I was promoted or qualified for a salary increase. My career educated me in such a profound way that when confronted with his diagnosis I knew I could manage whatever came my way. But I was not prepared for the fast forward life style; so many doctor visits, so many prescriptions; so many decisions to make or items to track; no where to turn for outside help - so lost in the finality of this disease with no cure; so many changes similar to his healthy personality in this dynamic man I cannot differentiate which is which. Inch by inch we make it through each day. I have assumed most of his former role - I drive, he navigates. When he smiles or answers me I am so pleased I try a little harder to keep him safe and reasonably comfortable.
I am sitting here thinking and typing; he is in bed, not asleep - waiting for me to come to bed. Sometime we talk, sometime we don't. I have been lonely for so long it's like a second skin.
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Originally posted by: DLMifm
quote: Originally posted by Geneva*:
He travelled in business but there were no family vacations. His personality was strong, direct and sometimes harsh but always fair.
I was lonely many years, long before his Dementia diagnosis in April 2011. Lonely from the beginning probably. There was no solution to my lonely, melencholy life so long ago I built another life, one that he recognized only when I was promoted or qualified for a salary increase. My career educated me in such a profound way that when confronted with his diagnosis I knew I could manage whatever came my way. But I was not prepared for the fast forward life style; so many doctor visits, so many prescriptions; so many decisions to make or items to track; no where to turn for outside help - so lost in the finality of this disease with no cure; so many changes similar to his healthy personality in this dynamic man I cannot differentiate which is which. Inch by inch we make it through each day. I have assumed most of his former role - I drive, he navigates. When he smiles or answers me I am so pleased I try a little harder to keep him safe and reasonably comfortable.
I am sitting here thinking and typing; he is in bed, not asleep - waiting for me to come to bed. Sometime we talk, sometime we don't. I have been lonely for so long it's like a second skin.
I empathize with your situation. Many years with Minnesota Mining (dates me newbies speak of 3M) and then with other companies with road warriors and being on the road myself. My wife rarely mentioned how lonely life was at times. Now I slip into the lonely world. She sleeps and snoozes, sometime she talks and reminisces. Some times she just watches TV. I feel so lucky that she is mostly in the early stages, with occasional times taken over by AD.
This wonderful cyber community is a place to seek solace and assistance of every nature. Here, You are not alone.
DLM
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Originally posted by: w.bert
I understand and certainly feel bad for everyone who has a loved one with this disease. I would rather have my husband have cancer; at least we could communicate. Now it is like he is here in body only and I have no one to talk to and laugh with. It is very tiring both mentally and physically for me and I cannot and do not expect my two adult children to help too often as they should be enjoying their lives and family. I am in the process of looking into nursing homes which I absolutely detest but feel it is best. He doesn't know me or where he is.
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Originally posted by: SherylS
A lot of our conversations include the word "pee-pee". He still does have a few words and was able to hesitantly say 'have a good day' to the receptionist when we left my chiropractor's office today. A long sentence for him.
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Originally posted by: Mimi S.
Hi. W. Bert,
Welcome to our world. We're so glad you found us.
Do call your local Aliz. Office. Click Chapters below. They might able to help in your search.
Do pop in at times other than a grand tour. Speak to other caregivers(And yes, you will still be a caregiver, even after he's placed.) Choose carefully and I think you will be pleased.
Good luck.
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Originally posted by: Snorky
quote: Originally posted by w.bert:
I understand and certainly feel bad for everyone who has a loved one with this disease. I would rather have my husband have cancer; at least we could communicate. Now it is like he is here in body only and I have no one to talk to and laugh with. It is very tiring both mentally and physically for me and I cannot and do not expect my two adult children to help too often as they should be enjoying their lives
and family. I am in the process of looking into nursing homes which I absolutely detest but feel it is best. He doesn't know me or where he
is.
I so understand where you are and it's a very hard decision. I didn't have much choice as mine became combative. He's been in the NH since May and has adjusted pretty well although I don't think he knows where he is. He hasn't known me or our children since last spring and it hurts so much. He doesn't even know about his past life. Now all he does is want to sleep on the bed. I have great empathy for you. Once you have made the decision and it's over it is a little easier but being alone is not fun and seeing them whither away breaks your heart. I agree with you about another disease and being able to talk and love each other.
I'm very pleased with the NH and the help have been so loving to him.
I try very hard not to dwell on what all we are missing as we've had a wonderful life but that's what makes it so hard too. You'll need to keep very busy.
Good luck on your search.
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Originally posted by: Moppy
quote: Originally posted by DLMifm: quote: Originally posted by Geneva*:
He travelled in business but there were no family vacations. His personality was strong, direct and sometimes harsh but always fair.
I was lonely many years, long before his Dementia diagnosis in April 2011. Lonely from the beginning probably. There was no solution to my lonely, melencholy life so long ago I built another life, one that he recognized only when I was promoted or qualified for a salary increase. My career educated me in such a profound way that when confronted with his diagnosis I knew I could manage whatever came my way. But I was not prepared for the fast forward life style; so many doctor visits, so many prescriptions; so many decisions to make or items to track; no where to turn for outside help - so lost in the finality of this disease with no cure; so many changes similar to his healthy personality in this dynamic man I cannot differentiate which is which. Inch by inch we make it through each day. I have assumed most of his former role - I drive, he navigates. When he smiles or answers me I am so pleased I try a little harder to keep him safe and reasonably comfortable.
I am sitting here thinking and typing; he is in bed, not asleep - waiting for me to come to bed. Sometime we talk, sometime we don't. I have been lonely for so long it's like a second skin.
I empathize with your situation. Many years with Minnesota Mining (dates me newbies speak of 3M) and then with other companies with road warriors and being on the road myself. My wife rarely mentioned how lonely life was at times. Now I slip into the lonely world. She sleeps and snoozes, sometime she talks and reminisces. Some times she just watches TV. I feel so lucky that she is mostly in the early stages, with occasional times taken over by AD. This wonderful cyber community is a place to seek solace and assistance of every nature. Here, You are not alone. DLM
Interesting, DLM that it is my own mining experience that has sustained me from a practical point of view...but from an emotional point of view I am acutely aware of my husband's fingerprints on everything - every path we took led to where we are today. Still in the early stages he has often expressed regret for missing so much.
Thank you, DLM . It's comforting when someone reaches out and posts a reply to me.
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