My husband is 83. Well educated and a past university prof. Right now he is well into stage 6. Communication skills greatly deteriorated, along with abilit to read and write. Walks slowly but we walk about 3 miles a day or 5-8000 steps if you use fit bit. He refuses to go to day care, trying to get him there is too hard on me emotionally. He daily care is dressing with much assistance, shaving him, aide in teeth brushing plus trying to get him into a shower with me once a week. These are things we all do. I find myself enveloped in all the emotions, and a great sadness every morning, watching him eat and spit some stuff out, and trying to be interested in his story telling which does not make sense.
Yes, an all too familiar story to most of us here. Welcome, Mother of2, to the club nobody wants to be in. My husband also refused to go to a day program---isn't it frustrating? I'm sure others will be along to say hello. I hope you don't mind some hugs from somebody you've never met. We do a lot of hugging around here. : D
Mother of 2, I am so glad you are here. Believe me we all do understand. Is there any way to get some help to come into the house? He may be more open to that as a beginning step. Hugs to you.
Hi MotherOF2, You are in a tough spot. I do not see how you can continue to this without any help or respite. The day care issue is a difficult one. My husband refused to go at first but I was finally able to persuade him to go and it saved my life. Others on this site, however, have experienced what you have. The problem is not just the caregiving; it's being constantly "on duty." I echo CO2 in asking whether you can get some help in the house. Even an aide who could be a companion for him so you could have a break.
MotherOF2, I know not everyone wants to hear this but it would cost you nothing to have Hospice come out and evaluate your husband. He does not need to be on his death bed--he just needs to be declining. Of course they have their conditions but you can let them decide that. Is he losing weight, is his feeding ability going down? Any problems swallowing? These were some of the things that got my husband on Hospice. They will reevaluate every 3 months and if there is no decline then he would go off but usually there is a decline. My neighbors husband has vascular dementia and he has been on hospice for well over a year. They will come and bathe him and you will have the support of social work and a nurse to come and check him each week. I know it saved my life. Also know that there are many different hospices. If you get one and they turn you down, try another.
This is mother of 2 I have changed my name to lostandNOTfound as I did not remember my password. I do have a care aide come in 1 a week now for a couple of hours. Jim is having now more and more difficulty remembering words. Uses "thing" "it" etc . I have a hard time trying to figure out what he is saying. He does not think there is anything wrong with him, I think I will leave that as I have said in the past he has memory problems, short term memory not working as well, and even said he has AD. but he insists there is nothing wrong. Perhaps that is a blessing. Today he could not remember my name, address, and children's names. However when one girl called he knew who it was. So perhaps her voice triggered a memory. The care aide said that he felt my spouse had slipped over the past week. So now we are in a new spot and must adjust again. New grieving over the loss. I have been keeping a record of happenings since 2013 He was diagnosed in 2012 but know it was at lease 2009 when I first noticed he was having trouble.
You are right that for the Alzheimers patient it is a blessing that they lose their self-awareness. My husband was the same--lost his self-awareness early, and thought he was perfectly fine during the whole AD journey. He used to be very sharp,very social, a good story-teller...it is so hard to see them lose that and go downhill. It must be agonizing to be married to somebody with your husband's intellect and accomplishments and then see it all get sucked away by Alzheimers. It sounds like you are going to need more help before too long. I was the same as you, where I knew something was wrong long before anybody else saw it and long before he was formally diagnosed.
It is indeed a blessing that they lose their awareness. My husband never lost his awareness which I was told was very unusual. I think it made it all the more painful for me. It is good that you are keeping a diary because when you get to the point of hospice you will have objective evidence of his decline. One of the hardest things I believe is that once you get used to one stage they decline and you have to adjust again. It is a disease of constant change and adjustment for the caregiver. Like Elizabeth I knew something was wrong long before anyone else and more than a year before he was diagnosed. I know there is no set length for the disease but I have read the average is 7 years. It was almost exactly that for my husband. So much depends I think on their overall health to begin with. I have a friend whose husband was in the hospital with my husband during the last 2 weeks of his life and he is now,placed. He has Parkinson's and dementia and actually has improved since being placed a year ago. He is pretty much bed ridden, cannot feed himself but still can communicate and is aware. He was very healthy before and a physically big guy. Each case is different.
LostandNOTfound. My husband is entering stage 7. His communication skills have deteriorated even more. We are still walking daily 2-3 miles. It is a very very slow walk. I take him for car rides and lunches but of course he does not remember. Names of children gone, and also grandchildren. Still refuses to go to day care, but have a care aide come for 2.5 hours twice a week. This is not enough for me but too expensive to do more. $32.00 an hour. I was called motherof2 but forgot name so now this is my new name.
Sadness, the step you take next is really based on how much longer you can keep doing what you are doing. As we know with this disease the caregiver must always adjust to,the new normal. I had to,place my husband because like your situation he was still ambulatory and basically I had no,privacy in my condo. He followed me around all the time. For about 18 months I would take him to,the local senior center and he would eat lunch there and socialize but then they called me when he wandered in the women's bathroom and did not know where he was. He did go,to,daycare for a short time but really was not engaging in the activities and it was another job for me to take him and pick him up. You may want to look into respite which was the next step for me. Respite will give you a real break and may be what you need to plan the next step. I took him for a couple weekends and a vacation. The cost of care is always a concern. The main thing is you must do whatever you can to save yourself because you cannot save him. These decisions are so very difficult and you as his caregiver will have to be the one making them. God bless
Sadness, My husband loved to walk also. It was really the last thing that he could still do. Once placed, I went every day to feed him supper and then we walked the rest of the evening. He was unsteady on his own so he needed someone to hold onto him. We walked those floors till I thought I might go stark raving mad. But, he needed it so badly. I was trying to help him use up some of his energy before bedtime in the hopes that he would stay in bed and sleep better. It is so expensive to pay for outside care! If he is a veteran he would qualify for some care each month. If not, exhaust any volunteers you can to save yourself. We have a group at our church that offer companion care for a couple of hours at a time. Mine also refused day care...which he could have received through the VA. He adamantly stated "I don't need a babysitter!" He just didn't understand that he DID indeed need someone with him to keep him safe. Had he not gone into a nsg home (after an illness to get rehab) I would have done the daycare thing anyway. I was running on almost zero sleep and felt myself breaking to the point of not being able to do it any longer. Do what you must to save yourself!