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Jul 26, 2018 · New Study Results Regarding Nonprofessional Caregiving in Caregivers

Thanks Scott: Having just completed a twelve stint of care giving for my husband, it is a consideration for the one that is left to carry the weight. One does not know how the future will play out. In my case, I had the great opportunity of working at home while my husband was sick. Thus, was able to protect what little savings we had. Not only the long hours and added expense to make the long trips to Mayo or other institutions in the state, University of Michigan and etc. There are in many cases, no time left for the care giver to get help if needed for medical care, personal care and etc. I tried to get long term care insurance and the cost was prohibitive in my case and age. So here we are left with a little savings and perhaps children that won't be able to care for the
survivor of the patient. I was brought up to NOT depend on the government for anything, but that is the end game here if all else fails as it did with my
father. Our elected officials can solve this problem by sitting down and seriously looking how to pay for this type of care. Canada does it with a tax which
is used for health care. When people talk about health care, they are talking about insurance. We need to hold our elected officials accountable and let
them know that in this great country, problems for our sick population can be solved with the right solution. Luckily I came out ok with planning and being
able to work, my health is great. But what about those spouses who are not in great health and can't do the giving? So many questions at this moment
and not enough concern!! Please know that when we are giving, we just don't think of the cost, only how to do the best we can for our loved one!! I just
realized how many hours was put into giving and yes, it was all worth it and would do it again!!! ozys

Apr 17, 2018 · Husband refusing dialysis in Caregivers

Hi angiede2001: Over the last couple of years with hubby who suffered damaged kidneys and several UTI's was somewhat hard to deal with toward the end. His numbers were comparable to your husbands. Some of my friends who have experienced urology and kidney problems report an experience of allusions, unreal expectations from their loved ones. One might say a mental break down and some nastiness comes out with unreal dreams at night which the patient takes as a real experience. Many days my husband didn't understand why I didn't know what he was talking about. Sometimes he lived in a totally different world. I just went along with whatever he said was the truth for the day. His appetite was terrible and as I understood the disease, there was a reason why he didn't want to eat. The urea
had built up so high that it affected the taste of everything that was offered to him. So sorry you are alone. I know what that can do to
your mental well being. You are to be commended for "handling it", our friends who have not been through the 24/7 care giving role can]
not judge us nor should they? In the end, most people just don't want to hear bad news. It got so I just couldn't reach out to friends because it was the same old story for 12 years. Hang in there and do the best you can for yourself, which is hard and know you are
doing the hardest job in the world.
Best wishes,
ozys

Apr 13, 2018 · Learning So Much as Caregiver in Caregivers

Being the care giver to the one who is your soul mate, husband, father, son, mother is loving that person to the max. As a caregiver to my husband for 12 years and taking care of the household and doing a part time job but always keeping in mind that he was my lover and I was giving of myself to him in the most giving way by taking care of him and all of his personal needs. That giving is the best gift you can give to your loved one. Yes, your relationship to that person will change over time but one always keeps giving and giving and giving because that is what we signed up for when we committed our love to that person.. You will have challenging days and want to give up but if you can put yourself in the other person's place, you can bare anything. My husband always said he would do the care giving for me if he could. I experienced grief along the way as I considered the future and was scared by what will happen in the future to us if
he didn't get better. Also, I tried to get as much education about multiple myeloma that I could and what to expect as we went down the
road with meds and tests. In the end, my education really help me understand what was happening to him and how I could get the help
he needed from the medical community. We that have given to our mates the ultimate gift understand what all those out there that are
still doing the best they can deserve our support and care.

Please know there many of us here on this site that understand and care about you.
ozys

Apr 6, 2018 · Husband refusing dialysis in Caregivers

Hi @angiede2001
I certainly can relate to the "holding pattern" Yes, we want to see our loved ones get better each day but when that does not happen, we become discouraged. That is so normal for the caregiver to feel a moment of despair. I have experienced that feeling many times when I was taking care of my husband in the last years of his life; however, I also knew that it was one more day that I had him in my life to enjoy even though he was very sick and needed constant attention. If you can get away for several hours or have friends over to break the
tension, that would help. In my journey, I did have help three days a week which was a very big deal for me even if only 2 hours each time. I also put myself on the treadmill everyday for 20 minutes each day which helped with the stress. Please know you are not alone
in your quest for better health for your loved one. Several weeks ago, I lost the love of life and now realize the "holding pattern" was one more day with him. Take care!! ozys

Apr 4, 2018 · Outside help in Caregivers

Hi there harriethodgson1: Certainly can feel your need for help. I used the local senior center who offered house help and respite care so I could shop and take care of business. I had them for bathing aids three times a week for two hours which was a big help. My husband didn't want to get in the shower but would do it for the girls who took care of him. He had a great sense of humor and he grew
to look forward to seeing them and they him. It became a mutual admiration for them plus it gave him outside company. If your husband
is a veteran, there is also respite care available through VA, which I had for another four hours a week so I could get to my other office
away from home. I had this help the last 2 l/2 years of his life. He was a 12 year cancer survivor and before I could get help was on my
own with no family near by so I can appreciate your problem. It is the hardest work you will ever do in your lifetime.

Bless you and know there are those of us that support you
ozys

Apr 4, 2018 · Meet fellow Caregivers - Introduce yourself in Caregivers

Bless your heart @patti1952, I can only imagine your stress. I was a caregiver to my husband for over 12 years with Multiple Myeloma and experienced so many ups and downs in the journey. Please know that you have friends on this site that understand your problems and send good wishes for an answer to your immediate problems.

Apr 3, 2018 · multiple myeloma in Blood Cancers & Disorders

Hi Mrs Doc:

I was a caregiver for my husband for 12 years. He was diagnosed with plasmacytoma of the sinus in 2006. It is a disease that leaves
the patient very tired no matter what meds you are on. In March of 2008, he was diagnosed with multple myeloma and survived 10 years on Revlimid/dex off and on. He lived a fairly pain free life and enjoyed each day. Yes you will face the extreme fatique which
is part of the disease. Hubby slept a lot but when he was awake, a pure joy. The new drugs are wonderful and will extend the multiple
myeloma patients lives much longer than even 10 years ago. Good luck, ozy1

Jan 6, 2018 · A New Year Message for Caregivers in Caregivers

AMEN!!! I feel for you and have been there and done that for the past 12 years. God Bless ozys