My first husband died of pancreatic cancer 13 years ago. I have been married to Fred for seven years. He is in the middle stage of Alzheimer's and also has Parkinson's disease and cannot walk or move from chair to table, to chair without assistance. I have been doing it all but am so afraid he is going to fall or I am going to hurt my back. We have no long term memories. It is a very strange situation. We both have children but no one in the area. Is anyone else in this situation? Except for my children, I feel very isolated. Please respond. Kiltie
Kiltie I am so sorry for your bad luck the second time around. Friends disappear when they are not comfortable around an impaired person. Cancer they can see. Dementia is another story. Is dementia day care available in your area.
Welcome to my website. We have many members who are in 2nd (3rd?) marriages, and also do not have the decades of love and long term memories to fall back on. I am sure they will be along soon to answer your post.
As for your isolation, you need to get out and find friends and activities for yourself. Is your husband in Day Care or are you caring for him 24/7? Let us know a little more about your situation, and we will be able to come up with more ideas for you.
Although my husband and I have been married for 47 years, we have moved all over the country. We have no long term friends. We moved too frequently. We have a huge Christmas Card list and most of the people on it do not know about his dementia. I wrote the last of the positive retirement letters last year. I've been monitoring his email (since he gave up looking at it about 6 months ago) and when people write, I let them know what is really going on. I'm not sure if I'm doing a letter this year. Or even Christmas Cards.
Even locally the disease isolated me. He wanted me to be around all of the time even thought he didn't need me to be around all of the time, so I didn't go out.
I became aware and learned to fight the isolation. I'm not doing all that well with it, but it improves.
So yes, you are not alone. Not in how you feel. There are people here with exactly your situation, but as you can see from my story, you don't have to have exactly your situation to understand the whole isolation thing. All of us deal with that.
Kiltie, my first husband died of pancreatic cancer 21 years ago, so I know what that was like for you. You have my heartfelt sympathy...
My current husband and I have been together eighteen years now, and his symptoms did not become obvious until 2004, so I have many more years of a close and loving relationship to fall back on than you do. It must be so hard, to be a caregiver without the history of a long, solid marriage to help you through it. And although my husband was diagnosed with moderate AD at that time, his symptoms are still not as bad as your husband's. I can still take him everywhere with me, as long as I don't get him too tired or over-stimulated. I do have a serious back problem which worries me ... vaguely, in the back of my mind, where I try to keep it buried ... and when the physical demands of caring for my husband begin to grow, I am concerned about how I'll deal with that.
I know I should be more proactive in planning for emergencies (there are good threads on this subject, lots of really good advice, I just have to get off my duff!!!)
Still, despite being able to go to the grocery store together, or to go for daily walks around a nearby lake, we are fairly isolated. Neither of us has any family in the area. We never did much socializing, having spent morning, noon and night working at my small business all these years. I'm still trying to pick up the pieces and figure out where to go from here, now that the company is going under. So I don't feel much like socializing right now (other than spending time with everyone here, bless all of you), even if I had the time (and money) to do so; and my husband is a little leery of trying to make new friends when his own mind is betraying him. When we get a little further along, I think I'll be able to seek out new friends to pal around with, and so far, it appears that my husband will be cooperative about day care if and when I find another job. I hope he stays that way...
Kiltie - Welcome to our club! My second husband deceased from cancer in 1996. I met Hank in the grief group for people who used Hospice. He has AD and PD, like your DH. Guess why we are all chatting on this site today? We are homebound - some more than others. We can become your friends and even provide a laugh or two. You can come here day or night. Even in the middle of the night there is usually someone posting.
Welcome, Kiltie, AD disease is a lonely disease for everyone involved. I am so sorry you need to be here, but glad you found the place to come to vent and inform yourself with members who know what they are talking about when it comes to caregiving. my best -divvi
Kittie, When I had Hospice for my Mother this winter they told me they also did Parkenson. This was after I told them he had the Parkenson. Your husband might qualify since he can't walk. They are wonderful and it would be worthwhile to give your local one a call and maybe they would do an evaluation. For my Mother, an aide came out 5 days a week (at my request) and got her out of bed, bathed and dressed her ready for breakfast. They also changed the bed, if needed and put new sheets on the bed. They requalify patients every 3 months, I believe and I think as long as they are not getting better will extend the care. A Nurse also came out 2 times a week to check on her. Medicare takes care of this as well as providing diapers. lmohr
A warm welcome Kiltie. I have only been married 9 years, and after the 2nd year of marriage my husband was diagnosed with cancer. Well, we beat the cancer, it was a difficult journey, but three years later I noticed memory loss. Then came confusion, then lack of comprehension. He doesn't have AD, but rather cognitive impairment/dementia caused by whole brain radiation. I too have no decades of memories to look back upon. It's sort of like, we had a couple of good years, then the bomb hit.
You will feel a lot of comfort in this site, because you are no longer truly isolated. You can express anything and no one will sit in judgement of you. We are all just sort of holding on to get through this.
If you ask specific questions, be assured someone will answer. You didn't give too many details.
Great to have you with us Kiltie. I have no long term memories with my DH either since we have been married only 4 years and together a total of 12 years. My previous husband was also ill and had numerous major surgeries including three on his main artery from his stomach to the arota (very unusual). The chief of staff of vascular surgery at UCLA did the last surgery he had. His illness lasted for more then 10 years so I sometimes feel I am getting a second dose of care giving that I didn't plan on. Also, he was addicted to pain medication and drank. Very sad situation. My present DH with AD and I rarely talked about our past memories except in generalities so I never thought that was a problem. We both come from backgrounds that are similar so we just generalize a lot. I know you will do fine and everyone here will help you. These spouses have heard it all so don't be afraid of opening up...it really helps relieve the stress.
Another welcome, Kiltie. My DH and I have been married over 50 years and we do have children nearby but I still feel isolated. My children come to visit but they have their jobs, children and their own lives. I feel bad if I leave him for more than a couple of hours to shop, buy groceries and run errands. He has severe arthritis and can do very little so he wants me here with him. I think all of us here feel isolated.
I am extremely thankful for this group. This disease is so long and so awful I guess we should understand why friends and family don't want to hear one more ugly detail. It sort of reminds me of 'crying wolf', since I've thought things were pretty bad and now realize they were nothing like where we are headed. I had a family member whose husband died last month of EOAD. We have been very close, but now I can tell she doesn't want to hear this! So - we just come here and let the others be is my feeling. Can you imagine how isolated folks were before the internet, email, cell phones, TV? And, there are a few million out there that don't know of this web site. My husband's Father probably had AD and his Mom didn't have a clue what was going on. Can you imagine dealing with this and having no knowledge?