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Hi Marge!

I'm so sorry to hear about your husband. Being his caregiver must be a real challenge. It seems that men with dementia often get angry, and I hope that your husband will be okay and not abusive to you. If that ever happens you need to get more help - seriously more help :).

My mom is 86 and has has had mild dementia for years, but it seems to be progressing a lot faster these days. We moved her into a group home 2 years ago after my step-father died because she was not physically or mentally able to care for herself. She still is pretty lucid, but she's started sundowning, hallucinating from time to time and just not taking care of herself (she gives her caregivers a really hard time whenever they want to shower her, or change her diapers). She also is not eating right, even with an appetite stimulant - it's sooo hard to watch her wasting away.

You need to know there are many of us out there who share your grief. It's never easy to accept this kind of illness. I'm 58 and my husband is 62 and every once in a while he says or does something that really scares me and makes me think he's losing it - you just never know.

Please do continue posting - I will reply when I can for sure.

XOX
Kathie

Marge, so sorry you are traveling this road. We are here for you. Glad you are getting a little help.
Growing old is definitely not for sissies! God love ya.

We are here for you. Please vent to us. My 96 year old MIL had the best mind in the world untill she fell at age 92 and broke her wrists. She had to have surgery and it has been all downhill from there.
Now she basically just sits and looks at us with that confused look on her face. She does roam the halls day and night, like a caged animal annd that is so hard for us to watch. We try taking her outside and sometimes she will comment on a bird or something. I am sorry it is going to be cold outside as she does so much better when she gets outside some during the day but it was 65 and we took her out on the porch and she started hollering how cold it was even though she had on a sweater and a coat and a throw. . At least she can still tell you when she is cold, loud and clear!!

Here is hoping we can help.

Dear, dear Marge,
What an intensely difficult time you and your husband are sharing right now. It is no wonder that you cry a lot. My heart goes out to you, for only a few months ago, I walked in your shoes. The stress is almost unbearable, and it is of utmost importance that you take care of yourself, too. Being a nurse, you already know that, but it's easy to forget when the burden is so heavy. It's good that you have some help, but the time is coming when, desperately, you will need it full-time. Start now... immediately, to get your doctor more involved and insist on more help, any help that he can provide. The physical demand on you will become too great at your age...at any age. My husband was 66 and I am 73. His disease progressed faster than any I've heard of; nevertheless, the strain was enormous; mentally, emotionally, physically, for both of us. My sons did not live close either. They were good to support me emotionally and financially, but that did not help the immediate physical requirements. Fortunately, my sister and her husband live next door and they gave much of the physical support I needed, especially in the realm of transportation and just being there when I needed them.

It is is of utmost importance that you do not take personally anything negative that your husband does or anything he says. It is so difficult for many to disassociate themselves from the hurtful remarks and actions, especially when the patient no longer recognizes you. It is the disease, the dementia, that is causing his behavior, not himself. Because of this, follow Kathie's advice about staying clear and being aware of any aggressive or combative behavior. They are not mentally aware of their behavior, and/or cannot control it. They can be incredibly strong during these episodes. I learned early on to stay wary of my husband's behavior, because it can change in the time it takes to snap your fingers. When it happens, for your safety, stay clear and get find help without delay! Don't try to rationalize, because that is impossible to do when one has lost their cognitive ability to reason. It's also very important for both of you that you continue to show and tell him that you still love him during this harrowing time in your lives.

Don't be ashamed or afraid to cry. Don't be concerned about what someone else might thing. Sometimes crying is the only way you can find relief from your pain. It is necessary for your own stability and sanity. I feel so inadequate writing these words when I know physical relief is what you need. I hope you have someone near who can help and comfort you. Don't fret about answering us. Just take care of yourself as you take care of your husband. But, as Vicki wrote, we are here for you. If you have the time or inclination, vent to us. Maybe it will ease your burden somewhat. I wish for you strength, courage, love, patience, and understanding. You need it all...and more!
Julie

AMEN!

My husband had age-related dementia for 6 years and he just passed away on 9/8. I care for him at home nad had fulltime help during the days for the last few months. It was hard but I am glad that I did it -

Feel free to PM me if you would like. I guess I would say that the five things I would suggest you remember:

1) He is doing the best he can and you are doing the best you can. That is all anyone can do. You will have good and bad days but do the best you can. You will develop patience, compassion and mercy and you will never be the same again.

2) He will have times when he is more lucid than others so stop everything and spend those times with him. It will give you the motivation to go on.

3) He will need you to manage his care later on when he is too much for you to manage alone. Remember why you love him, kiss him, hug hime and tell him not to be afraid - you will watch out for him several times a day.

4) Keep the lights bright - it helps and keep him moving as long as he can...it helps.

5) If he suddenly declines, it is usually another infection - dementia is slowly progressive until he gets sick with something else...

HippyGirl, God bless you for sharing what you have learned with others, even while you are adjusting to your loss. You are a blessing to everyone who knows you.

Thank you from the bottom of my heart. I will apply these to Ma Katie also.

I appreciate all of the messages of support. We do not have close neighbors and live (in the woods). Our acre and a half is fenced in which is very handy. My husband has been fairly good mentally, but did have a fall on Friday. Since he refuses to go to the hospital when he falls, my criteria for calling the ambulance is that he has fo get up by himself or he has to go to the hospital. His MD agrees with my criteria.Our son and grandson were here on Sunday, so perhaps that is why he is better. It upsets my son when his father does not recognize him. I have to remind him every day of my name and that we have been married for 56 years.
Thank you again.
Marge 8386

It is hard on the children to see their parent deteriating mentally or physically. You see him on a 24/7 basis and may not see it happening as fast as they do if they do not see him as often. I know when Ma Katie's children come once a year as they live so far away, they take it a lot harder than we do
because we see it, and I hate to say we get used to it, but we live with it daily and have learned to
not get so upset because our heart would not be able to take it if we felt the loss everyday.

We spend as much time as we can making her know we are there, when some days she has no clue. But we know and make sure she knows she is human and not a wounded animal. We make sure she is clean and fed and looks nice even though she does recognize herself in the mirror.
We love daily. So we concentrate on the moments of improvement, not the momenrs of descent.

We are here if you need us. Use us because we may be the only ones who truly understand as we also live with dementia 24/7, or have.

God bless you and give you the strength to see through this disease and realize he cannnot help it, he would change it if he could, and he is fighting with everything they have to stay as normal as possible.

Please take care of yourself. The more I deal with dementia, the more I fear I have it. Stress,
weariness, and the fear of the unknown can take its toll on the caretakers.