I found website and have been reading posts: Many posts are about experiences I have already been through with my husband. As I read these posts I have realized my feelings and fears aren't so darn crazy afterall. Husband is 75 and I am 64 and have retired frm work 6 years ago to care for him. It has been tough! He is now no longer able to walk and barely talk. Talk is mostly gibberish except when he curses, then he doesn't mince words. It is like being a widow but you are not. I am fortunate to have help 7 days week but I have to be here to help them. I can run to grocery when he is napping but I rush home. Helpers are a blessing but are a pain in the a@@ arguing over which one drank the last sprite and petty things. They are companions to me but cannot fill the void that is left by alz. God bless us all! Your post have assured me I not as nuts as I have felt!
No Nellie, you are not even close to being nuts. the helpers are there to let you get out and get away from the situation. If that's not happening, what are you paying them for.? You need respite. you need to have lunch with your friends, go to a movie, go shopping. As long as you keep your husband at home you must look after your own mental health. And respite, time away from him is vital for you mental health.!!!
Welcome to my website. You have come to 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".
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.
Nellie, You really need to have home health care givers who can do it on their own for a few hours to give you a break. I just try and get out even if I just drive around or sit in parking lot and make phone calls. You need to get out! They need to take up of the slack. That's what they are there for. I have friends because we keep in touch. I don't need to pay for one and don't expect my DH's aid to fill in that void. I understand how much you miss as we are close in age (I am 65 and DH is 78) and DH is in probably a late stage 6. I miss having a conversation with him, and being held and I would be the type who usually wouldn't think someone could take care of him as well as I can but have come to the conclusion that in order to do that I need to be refreshed myself. We know how you feel but the most important thing now is that you take time for yourself.
Thanks, I do have grandchildren that get to spend nights. We do get to get out but I cannot "cut the cord". I hurry home. This spring I will be able to work outside which I love to do but there is always that loneliness that creeps in. Right now I am awake and waiting on 11pm diaper change time. He sleeps in hospital bed and I want to crawl up and snuggle but I don't dare cause he would knock me on floor (laugh). I find it is easier to laugh than cry! Super Bowl is on but only for the noise! Thanks
I've always said no one can take care of him better than I can. Since he has to be lifted frm chair to bed etc. I just needed help! I let caregivers bathe and feed - I take over around 3 when he is placed in bed. Thanks
I've always said no one can take care of him better than I can. Since he has to be lifted frm chair to bed etc. I just needed help! I let caregivers bathe and feed - I take over around 3 when he is placed in bed. Thanks
Welcome Nellie! So glad you are here...post often. This is a wonderful site for spouse caregivers. We will hold your hand through the scary parts of AD.
No Nellie you are far from nuts.. In fact I would bet at the outset of all of our various situations, we all felt the problem was US not them..from the great 'Pause to who knows..but they are not the problem the problem lies with us...that we just can't seem to get organized enough to get things done like we used to do or we think that since ( for some of us) DH retired we now have too much husband around..and there is more work and there are more distractions in the day..and we get frustrated not at them...yet..but at ourselves...at least that is how it was with me. It started some 6 years ago with the garage..I wanted him to get that damn tool bench cleaned up..then he had heart surgery..so there was en excuse..so I say I'll put out the card table and we can do this together and you tell me what is important and what can be tossed..didn't happen..friend said don't nag he will get to it...but he didn't..then there are the things like the patio needs resealing or something needs a little paint or fix up..didn't happen..but he could go fishing or golfing..or something...grrrrrr..and then the TIA..and then the real first signs of what is going on...and then the DX..So I have been at this longer than I give myself credit for..and it is stressful..there are the good times mixed in with his funny sense of humor and quick wit which is still there. But when I get tired or just sick of the routine day to day..and am wanting alone time I can get testy..just so tired of answering the same questions again and again...it never ends...so no you are not nuts..We could take a poll and I think it would be interesting to see how many of us caregivers felt at the outset the problem was us not them..
Welcome Nellie. I too, have followed this web site.. Joan does a fantastic job keeping it up and running tho she has more than her share of troubles too.. I appreciate the fact that I can come here, read exactly what other members are experiencing and feel better...... this disease is one without cure so hang in there, know that by sharing, it does help with the burden... takes away the crying jag we all get and gives us some courage to buck up and start again... For me, the worst is NEVER doing anything to please DH..And Lord knows I do everything.. I am guilty of insisting on his doing things that he is well able to do but because he CAN, he expects me to wait on him... I call this tough love..He stays mad as a hatter 24-7 but that's the norm here for years.... In the end, we as caregivers feel used and worthless a lot of the time... DO take time for yourself... I can be found at Starbucks with a coffee when things get bad...Use to feel guilty about THAT, but by coming here and listening to the encouragement, I feel.now, it OK... You will find that some friends and not so friends will be critical about even that small selfish gesture...Let that roll off your sweet self and be assured that until they walk in your shoes, they have no right to judge... If you can get help, get it... Hopefully, we'll all survive this and a bright future will be waiting for us.... Smile, Nellie, You are doing your best.. To be human is OK,, to be imperfect is OK, to FEEL is also OK..To be a little NUTS is also OK...
welcome nellie. its good to have a safe place to land to express our vents, saddness and fears while caregiving for AD. i also tend to agree that you must cut the umbilical cord and allow yourself some slack to enjoy your time out. i was/am the worlds worst about this same thing, thinking nobody can do a good job with DH but me. wrong. they are none the worse when we get back from a movie or lunch with a friend or shopping trip. it takes time to allow yourself this luxury but once you make the hurdle its much easier. lots of good handson experience for whatever you need and many here to hold hands and pats on the back. divvi
The main problem is i only can afford one helper each day and even at one a day that adds up to considerable $$$ each month. He cannot sit up, walk, feed himself and has to be lifted. It take the two of us. To be honest i really do appreciate this time with him oppose to when he was mobile and in fighting mode most of time. He is so much easier to care for now. i just miss him. I do take time to run errands and beauty shop. I may just schedule one trip to town each day but sorry just havent "CUT THE CORD". He also has diabetes and Parkinsons added to this AD> Hope every one has a good day. It is so nice to correspond with you all who are in "same boat", only God knows were it's going>
nellie, with all that you post about the declines your spouse has inability to sit, walk feed himself etc plus diebetes and parkinsons you may be able to get his dr to refer hospice for you now. it by no means intends that the inevitable is upon you but that you are able to qualify for additional help paid thru medicare. since there isnt a cut/fixed 6mos to live rule with AD other means of diagnosing thru loss of ADL's is how they determine qualifications. its a great help if you can get it. it wouldnt hurt to see if your dr will call them out to assess your husband. it may save you some days of paid caregivers and more time to get out. divvi
Thanks divvi: He goes to dr every 3 mos. due to diabetes etc. for blood work, when we went Oct. 2010 dr said it will not be long now. we went back 2 wks ago dr didn't say anything re: prognosis. I didn't ask what he meant by "it will not be long now". Just sent me in grieving mode, i am better now but on alert. We go back Apr. and i will definetely ask re hospice. I am not familiar with hospice. We have had home health services twice but were dropped due to no change in status. I believe he does qualify for hospice and will ask.. His appetite is great eats every meal and has glucerna shake with meals. Recent document i had to have completed doctor wrote "advanced stages alz". thanks divvi
nellie many of us here have had hospice services alot longer than 6mos. they requalify you after that time if declines continue. you dont have to wait til april. thats 2 mos if you qualify you will have upfront help now. you should be able to get a hospital bed, chair, wheelchair, anything to aid you in cargiving. many also supply incontinence and personal care supplies. this is a no cost to the patient. everything is covered by medicare. the comment the dr made is a starting point that you should call him and say due to his comments you are requesting hospice evaluation. it cant hurt and may give you much needed help. if not they say call them when things progress later-nellie i surely dont mean to push you getting an evaluation if you are nt ready but i hate to see folks who may qualify not get the extra help if they do qualify earlier.
Thanks! I order diapers and gloves frm HDIS and that is 200 a month. Hospice could help save there for sure. I already have hospital bed and bath chair, wheelchair also.I'm so glad I found u all! God bless all of u.
I did have home health nurse tell me if ever on hospice and time for re-cert, when ask about eating and weight to just state he looks like he has lost weight.
Iwant to thank each of you for your encourgement to contact hospice! We were approved today. Hospice will furnish glucerna, meds, gloves, diapers, shampoo, lotions and creams and baths 5 days week. If I wish to use respite: five nights a month in facility in Jackson, Ms. This is a non-profit hospice. I am blessed to have all of - thanks again.
Nellie, I am so glad you found this site. It is what helps me stay as sain as I am,,,,, Also about the Hospice and respite.... Take care and keep posting......
Just a note: I see the difference in hospice diapers and Tena brand. No comparison! Tena quality is better. I will continue ordering Tena and use hospice diapers in emergencies.
nellie yes the hospice diapers lack alot. but like yo say i use them on days of alot of changing going on and sometimes over the tenas for double support. glad to see you have help with all the rest. divvi