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Conversationalist
Posts: 13
Registered: ‎10-02-2017

Re: What is most difficult for you managing a loved one’s healthcare?

Message 1 of 15 (141 Views)

Hi Charlene,

 

You really have a lot to deal with taking care of your husband. It sounds like you are probably sleep deprived having to get up so often during the night.  Have you spoken to your husband’s doctor about seeing a urologist to address the need to urinate so often during the night?

There may not be a medical solution, but if he has BPH (an enlarged prostate) that may be causing problems and a urologist may have helpful suggestions.

 

Depression is a common problem after a debilitating stroke. Perhaps an antidepressant would help? Although I suspect he is on medications and adding to them can cause problems, so caution is needed. The depression can be eased if his isolation is lessened. It is great that the men come over for fellowship. If there are any other opportunities for him to interact with people with whom he share common interests, I would encourage that, too.

 

You are doing so much. Please remember to take special care of yourself. 

Best,

Margaret 

Info Seeker
Posts: 3
Registered: ‎11-12-2016

Re: What is most difficult for you managing a loved one’s healthcare?

Message 2 of 15 (153 Views)

My dear friend!

 

Before I begin, was your spouse ever in the military? If so, you might want to check with the VA In-Home Care Program. The monies will alllow you to hire someone to come in to do house chores, healthcare/hyiene needs for him, and prepare his meals. The money will come directly to him or you.

 

I empathize with what you are experiencing with your beloved! PLEASE ALLOW him to read my post to him (and you) to express my words of encouragement! I am prayerful my message is a comfort to both of you!

 

The following message is for your spouse. It appears that you are a "man of faith." Ask God to give you the open mind, COURAGE, and WILLINGNESS to move forward in your recovery process! I am a stroke survivor (9 years) and it affected my left side, to wit" my arm, and leg. The doctors said it would take months for me to walk! I have % use of my left arm! Thank goodness, I am right-handed. I was determined to prove them wrong! I was 57 years old when my stroke occurred and I had to move back home with my mom who was 85 year old; I am still with her. I was hating life but I wanted tro live because God gave me life; I was a daughter, a mother, grandmother, sister, and had many people who loved me more than I loved myself at that time. I went to therapy consistently for a while stopped, wanted to just stay home and feel sorry for myself. I would pray and nothing happened. Throughout my inner and physical turmoil, I attended church. But today, Sunday, November 12, 2017, I heard a message from the minister, which in summary was: "when we pray, WE CANNOT pray the same prayer expecting positive results particularly if WE do NOTHING for what WE are asking God to do! Our God will honor OUR REQUESTS when WE MAKE THE EFFORT TO DO WHAT WE ARE REQUESTING HIM TO DO! HE CANNOT DO IT ALONE!

 

Today, I am NOT fully mobile, but I drive (very well-carefully, mind you, using my good arm (right), I go to the gym, I exercise at home, I read the Bible, and I cook for my mom (who is 95 yrs old).

 

My friend, WE MUST have the desire to want to LIVE. REMEMBER: this is not all about you! You have a wonderful life-time partner (your wife), who ensures that she takes care of YOU! And yes, you are probably angry with God, those closest to you, and most of all, YOURSELF! You probably ask "Why me God?" If you read the Bible, then you are familiar with this scripture: "He that . . . go before thee, he will be with thee, he will not fail thee, neither forsake thee, fear not, neither be dismayed." (Deuteronomy 31:8)

 

In closing, I am prayerful my message has brought you comfort! I understand what you are experiencing. I have lived experience. Be kind to yourself, your wonderful wife!  Show EFFORT and EMBRACE THE WILLINGNESS TO LIVE! God is NOT DONE WITH YOU YET! 

 

This is for your wife! I commend you for "standing by your spouse." Love him until he can love himself again." Be not dismayed for the Lord they God is with you.

 

Peace & Blessings,

 

Faye Malone

Info Seeker
Posts: 1
Registered: ‎07-29-2010

Re: What is most difficult for you managing a loved one’s healthcare?

Message 3 of 15 (181 Views)

My name is Charlene.  My husband had a massive stroke almost 7 years ago.  When he was able to come home after the stroke, he could walk with quad cane with assistance but has slowly gone downhill since even though he has had plenty of therapy off and on.  His left side was affected.  Now he cannot walk but can swivel from chair to wheelchair with the help of a transfer pole which we have by his easy chair and by the bed.   I continue to work part time even though I am 70 and that pays for a caregiver to come in while I am working and doing errands.   I am no longer able to give him  a shower even though we have a transfer bench in the tub,  The caregivers take care of the showers now.   The hardest part is that he has to urinate at least 3 times a night and needs lots of help to do that.  Half the time it is too late and Depends don't do all that good a job. I have a pad under him also.  Another hard thing is that he does not like to move which is so important.  I try to get him to stand up about every hour but he grumps about it.  He has a few exercises such as extending his leg and marching while sitting but he does not do them until I insist.  He needs to do voice exercises given by the therapist so he does not do so much choking but of course he does not want to do them either.  He wants to leave this world but the Lord is not taking him. I have been having a caregiver come in more often so I can get out a little more even when I am not working.  A couple men come once a week to have a Bible study with him which is good for him.    

Conversationalist
Posts: 13
Registered: ‎10-02-2017

Re: What is most difficult for you managing a loved one’s healthcare?

Message 4 of 15 (363 Views)

Hi Beverly,

 

I am so sory that you have all of this on your shoulders, I know it can be so exhausting.

She  is very hard of hearing and will not get a hearing aid, do you know why? My mother had profound hearing loss starting in her early 80's and hearing aids changed her life. Not hearing is extremely isolating and can add to confusion and dementia-like behavior. 

Do you know what the cause of her refusal is? Does she not want to go to the audiologist? Is she thinking of the old fashioned hearing aids that are so visible and everyone can see them? I know my mother was still vain in her 80's and 90's and never wanted anyone to think she was old!

Hearing aids now can be very small and no one would know she had one in. Could you negotiate a deal with her? Ask her to go with you to the audiologist (maybe get your hearing checked too?) as a favor to you ask her to get her hearing checked and then go to a favorite place for lunch?

 

I have a suggestion about the controlling "nosy" behavior. I use the smile and nod technique. If you tell her what your doing and she objects or bosses you, just try smile and nodding and say "that is a suggestion, I will think about that" and change the subject. We often feel we have to bring the other person to our point of view, maybe just acknowledge her comments and move on without objection. You are both adults entitled to your viewpoints. But you certainly do not need to feel obliged to conduct your life according to her prescription.

If she's asking where are you going what are you doing, why, etc. Give a vague response and again, smile and change the subject.

 

Sometimes the controling behavior is a result of anxiety at the loss of control they are feeling. Try the smile,nod technique and see if it helps you to not be frustrated or angry.

Are there any resources to get help in? 

We used Home Instead when my mom first moved in. They had a lovely lady in her 60's come and help prepare lunch twice a week. It was more to give my mother someone to visit with when  I had very long working hours and my husband was traveling for work frequently. You do not have to have them come everyday or for nursing type duties. They have companion services that can be for short periods once or twice a week to give you a break. Our lady even took my mom to the beauty parlor or out for ice cream.

 

I wish you well, please remember to give yourself a break. Maybe ask your sister to commit to coming every Wednesday evening so you can go to a movie, or support group or dinner with a friend.

 

Best,

Margaret

Conversationalist
Posts: 13
Registered: ‎10-02-2017

Re: What is most difficult for you managing a loved one’s healthcare?

[ Edited ]
Message 5 of 15 (376 Views)

Hello SK,

Thank you so much for sharing your experience.

It sounds as if you and your mother are doing fantastic! At 98 her nutritional requirements are not what they used to be. Our philosophy with my mother was if she ate, great, if not that was ok, too. Mostly, her appitite was improved with company. If we sat and ate with her, she usually ate more, otherwise she lost interest.

As far as the fluids go, we sometimes used a dixie cup (3 ounces) and would ask her to drink it down 4-5 times a day. It seemed to work well, a large glasss of water seems daunting but a little "shot" of water is easier. Also, any liquid counts so if she likes coffee, tea, soda, juice they are all great sources of fluids. At 98 years old, my mother wasn't going to be concerned with the technicalities of fluid intake, she just wanted what she liked!

As far as seeing a specialist, that is of course up to you. I can say, we de-emphasized doctor's visits and concentrated on comfort and family. I could  have chased around to every kind of specialist, but at some point we had to realize that at nearly 100 years old, the body does have failings, we were not willing to invest energy into trying to repair what time was doing. And she was happier not being prodded and questioned by doctors.

Feel free to private message me if you want to communicate further.

Thanks again and best of luck with your mom,

Margaret

Conversationalist
Posts: 13
Registered: ‎10-02-2017

Re: What is most difficult for you managing a loved one’s healthcare?

Message 6 of 15 (382 Views)

HI Faye,

Thank you so much for your generous response and sharing!

Your mother sounds SO much like mine. My mother was 94 when she finally gave up her house and moved in with my family. She was devastated that she could not drive (we used the excuse of her needing a walker after breaking her hip to take away the car). And my mother also was aware of her gradual mental decline, so she became expert at hiding it.

 

I am curious about why her MD recommended the CT scan. To me, it sounds as if she has classic signs of dementia which can be very mild. And at 90+ what was his plan if he found other problems? My philosophy was less is more, I declined tests for my mother if we knew wewere not going to do anything about the results. When a  test was suggested, I would reply, "and then what?"

 

The loss of short term memory is absolutely a common thing in the very old, and let's face it, once we hit 90 we have to admit we are very old!

It doesn't necessarily have to be a big deal, it does get a little tedious for family members and others who are trying to communicate when the loved one has a 2 minute memory! And it can hurt feelings if people do not understand that she cannot help it if she doesn't rememberr that they visited for 2 hours yesterday and now she is saying no one ever comes, that was common for my mom.

It sounds as if you are very smart to have increased the helper to every week. Good for you, it is so important to know our limitations and to respect them!

 

Feel free to email me if you need a cheerleader!

Thanks again,

Margaret

Conversationalist
Posts: 13
Registered: ‎10-02-2017

Re: What is most difficult for you managing a loved one’s healthcare?

Message 7 of 15 (384 Views)

Thanks so much to your response. It can be so difficult to be emotionally available to the people who are relying on us. And because we are the 'safe" place, they sometimes feel like they can unload all of their crabby unhappiness onto us. 

I hope you have respite for all you are taking on and can recharge once in a while!

Margaret

Info Seeker
Posts: 3
Registered: ‎11-12-2016

Re: What is most difficult for you managing a loved one’s healthcare?

Message 8 of 15 (424 Views)
Hi there!

I experience the same problem with my mom regarding eating and drinking water. My mom receives Meals-on-Wheels! She is NOT fond of Meals-on-Wheels; even when she adds a bit of salt 'n' pepper! She loves it when I prepare her meals, and loves salads! Not certain if you have a COSTCO store in your area. I purchase the frozen salmon; it is seasoned and ready to put in the microwave. It takes about 4 to 4 1/2 minutes. It is delicious! I prepare a salad (lettuce, tomatoes), a baked potato and she loves it! She will also eat Marie Calender's frozen dinners. Keep it simple, my friend! I do the best I can with one hand because my left hand is immobile. In regards to the water, encourage her to drink at least one full 8 oz. glass of water; add a lemon. It will eventually work out for you! They are accustomed to having us "being there" to help!
Info Seeker +
Posts: 1
Registered: ‎10-29-2017

Re: What is most difficult for you managing a loved one’s healthcare?

Message 9 of 15 (451 Views)

I face many challenges in the day to day living with my 85 year old mother who is hard of hearing and frail.  She refuses to get a hearing aid and will not accept in home care for help with bathing. Her hearing loss interferes with any communication which she always confuses by never getting any facts straight.  Plus she wants to be "in charge" of all household decisions but never follows through.  The kitchen needs new flooring and has for over ten months but she will make no decision on types of flooring or who to hire to do it all the while not allowing great grandchildren to visit because of the need for a new kitchen floor. She expects to go on 3-hour shopping sprees at least twice per week and complains about great foot pain after doing so.  Both my sister and I shop for her as well throughout the week. She hoards all the stuff bought which just accumulates until she decides to take items back to a store which is another trip.  She is very controlling in regard to how long and where my sister and I spend our time and has to know every detail. Very nosy and wants to tell us both what to do.  My sister convinced her to give up driving several months ago due to concerns from relatives but she throws that fact up every chance she gets to let us know her displeasure.  I retired early from my job almost 3 years ago and was a "career gal" my entire adult life.  My father had several health issues and suffered from vascular dementia all of which  forced my decision to be around to help until he was placed in a memory care facility. He is deceased.  I immediately found myself in the position of looking after my mother which has become increasingly difficult not to mention that during this time I was diagnosed with DCIS Stage 0 and had a lumpectomy along with radiation treatments.  It could have been worse.  Bottom line I just started feeling more energetic but feel like my style is severely cramped by this 24/7 situation.  Tried talking with my primary care doctor as well as a counselor to sort out issues but no good solutions.  Assisted living for her would be a good option however she refuses the thought of it and my sister isn't "on board" either.  I know this is a rather lengthy post but somehow it just skims the surface of all the day to day challenges and unpredictability involved.                       


NerdyMom wrote:

The actual day-to-day caregiving -- a grumpy, noncompliant patient.   I've cared for my son, who has asthma, more times than I can count -- both in and out of the hospital -- and he's always so good natured and happy to do whatever he's supposed to do. 

 

I've cared for my severely autistic, non-verbal, adult step-son.   He can be less compliant, but he's relatively easy to cajole into doing his therapy, taking meds, getting a haircut, etc.   


My husband, however, different story.  Refuses to take medicine.  Refuses to eat or drink.  Gets grumpy about it.  So I have to be the person providing love/attention/care AND be the mean medical police.  All at the same time.   Personally, I find that to be very emotionally draining. 


No problems so far (knock on wood), getting medical issues addressed or talking to his providers.  


 

Frequent Social Butterfly
Posts: 262
Registered: ‎05-04-2011

Re: What is most difficult for you managing a loved one’s healthcare?

Message 10 of 15 (489 Views)

Hi there, SK Short,

You are very conscientious! I hear your judgment on yourself; some help would be awesome. Type in your or her zip code into www.eldercare.gov and go find out about free or subsidized services in your area, including meals on wheels. Americans get way too much protein, for a fact, but i hear your concern. Also, are there others who help you with her? You might need a break on a regular basis to keep fresh and kindly, rather than overwhelmed and resentful. Just a thought. 

 

You're doing great! I don't want you to give yourself such a hard time...

 

Jane