He is in a memory care facility. I used to visit every day for about 18 months. I was able to handle it emotionally because it was a nice facility and I was quite cheerful. I am only 67 and am in good health. For the first year and a half I enjoyed the visits and so did he. We laughed and chatted with the other residents and enjoyed the activities. There has been a lot of decline though. Also I have moved him to another facility where the people are more advanced in their dementia. He still recognizes me and tells me he loves me. The problem is that I no longer look forward to seeing him on a daily basis and I have cut back to four or five times a week. It isn't helping. I cry almost every day when I think that I am still bound to him emotionally yet he isn't really the man I lived with for thirty years. My friends and family say I should separate from him emotionally because he is dragging me down with him. This is the hardest part of the long trek for me. He has had increasing dementia for at least five, maybe six years. I am really worn out. I haven't been able to travel or have a male companion to do the things we always enjoyed together. We used to be so active. It makes me sad and lonely that all the interests we shared as a couple are no longer possible. He is childlike and very sweet. He was a wonderful husband and I still love him, but seeing him so diminished and being emotionally alone have really gotten to me. I guess I just am struggling to find a way to enjoy him now. And trying to be a good wife--whatever that means at this point. Any suggestions. I am so tired of crying and trying to figure out how to go forward. I am depressed.
I don't think there are any right or wrong answers regarding the number of visits that you make to visit your husband. Why not explore what number makes you comfortable for right now. What stage is he in? Does he have any memory of when you visit? I know that can be frustrating. My LO forgets the visit the second I walk out the door, so, I just try to live in the moment and use the time to access her progress, check out her health, give her treats, inspect her clothes and belongings, chat with staff to see how's she been doing, show her love and attention and then leave. She gets antsy after about 20 minutes, and visits past that time don't seem to interest her at all. How long do you stay when you go?
I don't think other people's judgment is proper. You have placed husband in place that he is well cared for and protected. I'd focus on your own health and not seek approval from others who don't know your situation. Unless, you've walked in your shoes, they can't know what you are really feeling.
And, seriously, you could try making an outing of it. Stop for a coffee and a chat on the way home, to help you unload. Take in a movie, or buy yourself a treat. Something, anyway, to leaven the lump. But advising you to take away one of the few things your husband can still appreciate... I'm not sure that would help either of you.
I like Pam's idea of joining other families for discussion and support, too.
I have had a lot of red hives pop up all over since December. Now they are spreading over much of my body. My body is yelling at me to get help. Most upsetting right now is the fact that I feel so alone. I tried unsuccessfully to get empathy from my 89 year old mom who lives far away. I was her protector as a child; she was in an abusive relationship with my dad and I had to be the strong one. I usually could rise to the occasion. When my father was dying, and his threatening behavior was becoming very scary, my hubby and I moved cross country for three years and helped her take care of my dad. Now after 8 long years of Alzheimer's care ( first my dad, now my husband) I am truly worn out. I don't feel strong any more. Although he is still alive, I am deeply mourning my husband Ken who was a huge source of strength. He and my daughter gave me the unconditional healthy love I missed as a child. My daughter is getting married soon and works long hours at her budding career so I don't want to lean excessively on her. She has thankfully learned to set boundaries and is cutting the apron strings a bit to prepare for marriage and motherhood herself! Ken's ability to help me has ebbed away due to his disease. So I feel a loss of my two pillars of support. I always keep a pretty strong facade for the world to see. But that is no longer possible. I guess that's ok.
Since December I have been in need of a shoulder to cry on. After a very sad Christmas, I told my mom I felt alone during the holidays and tried to get comfort in a phone call. That was a dumb move--a reversal of a long standing pattern where she leans on me. She let me know she doesn't want to hear my gripes and thinks I should just toughen up. Then I didn't hear from her for a while and she let her husband George take over the communications via email. My mother knew him for forty years and she married him right after my father died. Now he wears my father's clothes and enjoys living the high life at my mother's expense. I saw him as a harmless pleasure for my mother and he has never hurt her. However, I think he is trying to put a wedge between her and her children ( I have a brother too). George is the self appointed head of the family and is quite arrogant that he alone sees TRUTH. He has taken over my mother's thinking and the only thing that he can't fully control is her money. ( not for lack of trying).
He would also like to run my life and teach me how to find Paradise. He has a few strange beliefs from a small German sect and no matter what he says, my mother seems to agree. She quotes him as a great guru and deep thinker. He has been telling me that my husband Ken was "dead" for two years. He says I am like a Jew always choosing to suffer and wonders why I am throwing myself on the funeral pyre. I wanted them to know I had a great life with Ken and will treat him with the love and dignity he deserves -- as long as I can. When I tried to explain this to my mother and George in an email so they would stop counseling me to abandon him, George took it upon himself to aggressively shut me out of future communication with my mother because I "upset her." She may have difficulty understanding my grief because she had no similar attachment to my dad, and never shed a tear when he died. Still I had hoped for empathy. George wrote me an email, quoting a dictionary definition of empathy and said "we" don't believe in it. I have made my own troubles and they don't want those negative thoughts to enter their world. In the past, Ken and I would have just laughed about George being an a--hole and that would have made me feel better, when I felt misunderstood by my family.
I see that I have made things worse for myself by caring so much what others think. Why do I even listen to George? Perhaps because my mother tries to set him up as a guru. Reading this, it seems silly that I care what he thinks of me. He is just patching together his own version of truth. I was always an independent thinker who could see through such stuff, but now I am sort of falling apart. I fear I have created my awful skin condition to get love and comfort that will never come from them. Since these hives erupted, I have had strong recollections of being left alone on my 9th birthday when I had the measles. My family all went to the fair and left me home in bed with nobody to talk to. This feels the same. Even though I see the parallel, I can't stop the feelings of rejection and aloneness. So I am truly grateful to know that somebody out there will read this and care about my hurt feelings. It occurs to me that when I feel stronger I need to get back there. He may be trying to shut me out of my mother's life so he can control where her money goes. Perhaps to a religious sect of his choosing. I would rather see her pay it forward to the grandchildren. Yikes, I am feeling better. Still the protector. Thank you for listening!
I have a couple of thoughts. But for starts, I'm glad you get that George is an a@@hole, or a kook, or mentally ill. Your mom doesn't sound like she's got much going for her in terms of the ability to be there for you. It sounds like you need to let them go.
Re: your skin, have you checked for bedbugs? We had them last winter, and I also thought I had a terrible rash. Take a flashlight to bed and when you wake in the middle of the night, check the seams of your mattress.
Yes, get to the doctor for a checkup. You can ask for a referral for a psychiatrist if s/he doesn't feel comfortable talking about depression.
Do you have female friends? Go out to dinner, to lunch, to concerts, on a cruise. You'll be a more interesting visitor for your husband if you can tell him about a new play or book.
Be well, and let us know how you get on!
I have been doing volunteer work at a local hospital for many years, and about 4 years ago I was working with another woman, and much to my surprise she was dealing with caregiving issues regarding her inlaws. Thus, every Saturday we couldn't wait to go on duty and chat during down times about what is going on. We learned from each other.
That had helped me feel better about myself even though I was exhausted physically and mentally from my very aging parents. It did make going to the nursing home and to Assisted Living a tad bit easier.
I think you need to cut back to maybe every other day or every two days
I see women tending to their husbands on a daily basis in mom's memory care and I don't know how they do it and then some rarely visit and feel awkward I'm sure sitting with someone who can no longer really communicate
May I ask why you moved your husband from one facility to another - did his needs increase ?
Please think of this site as a shoulder to cry on
Then, I'd work on trying to relax a little and to rebuild your resources. Have you explored a support group for spouses of people who have dementia? Local organizations also offer opportunities to meet and get to know other single women who are facing crisis. I'd try to stay open and not isolate. It sounds like you are journaling and that sounds like a great idea. I've read that is very therapeutic.
I understand not wanting to visit your husband. My mom is in memory care and there is nothing happy about the experience. I am saddened every time I go. I feel like I am in a constant state of mourning. You miss the person they were, you see the decline - it is a slow, sad process. Maybe you just need a break. It may be okay to take a week or two off - go do something for yourself - like getting your health in order and don't feel guilty - you obviously have been a great wife.
Check out a local senior center - is there a dance class, tai chi, or painting class you'd enjoy? Try some different things even if you think you wouldn't be good at it - you might find that you'd have fun, even if it's having a good laugh at your attempts. No one says we have to excel at everything! And best of all, make some new friends.
Many senior centers also have day trips to local places - again something you can enjoy for the day and make new friends. And it gives you something to talk about.
My heart goes out to you. All these suggestions are good ones, but you're right, you need a shoulder to cry on. See if there isn't a support group nearby, and ask about whether there's a chaplain in the facility. They're there for you, whether it's a shoulder to cry on, or someone to give you some spiritual help. Just taking care of your own needs as you figure out what to do about visiting your husband will help more than anything.
I have a friend whose wife is in an Alzheimer's facility. He visits her once a week. Last week was their anniversary. He brought her a card and a gift, but she simply couldn't deal with it. It broke his heart. He does have a lady friend as well, who is also my friends. So sad for all. I do approve of his relationship with the lady friend. They're both in their 70s. I knew his wife too. She was a wonderful person. Not so much anymore. Alzheimer's is a terrible disease, not so much for the person, but for the family and other loved ones.
Keep on keeping on, girl. You'll figure it out. And if you decide to stop seeing him, please don't think of yourself as an ogre. You're not.
Your mother has moved on with her life and sounds content to allow George to control it. Remember she is only a few years younger than Ken. She suffered many years married to your dad and at her own advanced age is just relaxing and feelingGeorge is her shining knight on a white horse. We all know that is not true and eventually she may see through the illusion, or maybe not. But for now she is only interested in her own little world and maybe also has some degree of dementia so is thankful to have George taking charge. Unfortunately you are part of her unhappy past and it is easier not to deal with your troubles. Not motherly but easy. She just does not want to be reminded of all those unhappy years and the final few years of your Dad's life. You would probably prefer to forget them too, but now you see yourself in a similar situation with Ken. He does not share your Dad's unpleasant characteristics but you can't escape the symptoms of dementia.
Ken tells you he loves you. Of ccourse he does that is never going to change even if he can't remember who you are or why you bring him comfort.
It is clear you need a break and some medical help which you have realized for yourself.
If your husband does not remember when you last visited and still seems content when you are absent i would suggest you give yourself a couple of weeks off. I am not going to suggest you go out and join activities or volunteer or anything like that. Right now you are too fragile and must heal and recognize yours and Ken's new reality. If you can make the visits to Ken a stop on the way to doing something you are looking forward to, like visiting a friend or doing something to help your daughter prepare for her wedding. Five minutes with a friend on her coffee break or looking at linens for daughters new home is about all you can manage to start with but you will get stronger. You are a strong woman but even the strongest need rest. But first have that rash checked out and get some meds at least to tide you over. Sending you prayers and love.
We care!
Slow start doing some of the things you used to do WITHOUT GUILT - every day for 18 months has been an enormous effort already - try every other day or every 3 days because as you put so much effort into helping him enjoy life you are strangling your own - you may quite surprisedly find that going less often makes the quality of the visits better for you both
I cannot even be anywhere near you but feeling for you and sending you a cyber hug.
Sadly you are not alone. And I do think your writing that post has made you realise, that YES you can do it, NO they will not hold you to THEIR beliefs, and yes sadly your partner, your better half is gone, but isnt.
I once read an article about that being a widow was actually easy, and this written by the widow, that it was defined and cut, and all black n white with no grey. Her husband was dead. It seems it was her second marriage and far better than her first, and how separation and divorce meant one still lived, worked and breathed in that grey zone that took much more energy.
There was grieving, emotions, relief, but still tied down. No door could be shut.
I visit my Ma, she doesnt know who I am, but occasionally now remembers but thinks I am her older sister, well of course Im an old lady so how could I be her daughter as she is 'stuck' in her 20's.??
Even tho we were not close I was the one she 'moaned' to about my Pa and his dominating ways, controlling her on everything. And being the nurse, the one she looked to for comfort and advocacy.
Now Im the stranger, I leave her feeling totally drained, one never knows if she will remember one part of the conversation and repeating the fact she is 94, 15 x per minute is hard.
Then for you on top of those physical/emotional bits you are visiting one you loved, and somehow the shell you now visit is something to love also, but how, how much, how long, and then the why the what and more HOW ???
Please give yourself 3 days of the week, one to quietly be around the house, one to see you have cared for yourself, like hairdresser, food in the pantry, and then one day to go live. Catch a bus, go to a movie, wander a shopping mall, go to a play, go to the zoo. and breathe..
Im sorry your mother and brother are not there, that is so often the story, that the daughter has done the hard yard of caring for parents and then their own peer, and nothing to support them when its over or times are tough. I am guessing a stranger who understands will give you more support. I hope you find that person as you sit sipping your 3pm coffee